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How I became an Artist, whilst fighting with Disability and Chronic Illness

Rosalind Batty, North Mayo Art and Photography
Rosalind Batty

Hi, I’m Roz, and I’m the artist behind North Mayo Fine Art.

I’ve been creating art for most of my life, but have been an artist for 3 years. I might not have become an artist, had it not been for the fact that I became disabled, with multiple chronic illnesses, and became housebound.

I want to tell you a bit about what happened to me, and why I’m thankful that my life took the turn that it did.

I started to draw at a young age, and could always be found with a pad and pencil in my hand. My first drawings were the normal, square houses with the sun in the corner, and the V shaped birds. I remember drawing various animals including lambs, chicks and a horse that I was so proud of, and my people were the typical triangle body and fat arms and hands that rolled into one object. I was so proud of my drawings, and thought that they were the best drawings in the world.

I took art at school and enjoyed it so much that I asked the head of the art department whether I could take an extra GCSE in art, which I did (I did 2D and 3D art) I then went on to do a GNVQ in Art and Design in the Sixth Form.

I decided to get a job, and at that point my drawing took a step back, but I still dabbled in it from time to time. I always wanted to work in photorealistic art and that was always in the back of my mind.

Fast forward a few years, and I met my husband, and we decided to start a family, and thats where it all went wrong (for me).

Without going into a lot of detail (and boring you all), my pelvis broke and fused back together in the wrong place, and no one did anything about it. My consultant said it was normal pregnancy pain and I was just exaggerating it for attention. I was so angry. It happened again during the 2nd and 3rd pregnancy too, and still nothing was done.

I now have permanent damage to my back, hips and pelvis and I’m registered disabled. I’ve also developed multiple chronic illnesses including Fibromyalgia, Arthritis, IBS, Postural Hypotension, Asthma and Chronic Migraines to name just a few. I’m not telling you this for pity, but there is a reason for it.

I started many different crafts when I was at home with our first baby, including card making, stamping, crocheting, sewing, paper craft, cooking and weaving, and loved creating hand made items, but after baby number 3, my condition was so bad that I had to give everything up. I hadn’t been able to drive for a long time, my body was too sore to sit at a table to work, and I developed an allergy to every type of wool that I bought. I could no longer stand up to cook either, and I felt like my life was over. I was housebound, and on the verge of bed bound.

I was in so much pain that my bed became my best friend. I couldn’t dress myself, I needed help to have a shower/bath, and had to have the house kitted out with home aids to try and help me manage with everyday tasks. This was not how I imagined my life would be at 27.

I was in a very deep black hole and couldn’t see a way out. I thought that my life was over, and didn’t want to imagine the rest of my life lying in bed in agony. I fell into a deep depression, I hated having to be so dependent on my family, and incapable of managing the simplest of tasks on my own. Being in excruciating pain all the time was awful, and there was nothing I could do to change it. I’m allergic to all pain medications so couldn’t take anything to ease the pain, and other medication I was offered caused some awful side effects.

After many months of wallowing in my own self pity, I decided that I had to pull myself together and find something that I could do. No one else was going to fix me, no one understood what I was going through, and it wasn’t their fault, but without going through something like this, it’s impossible to understand the utter torment that comes with it, so I had to do it myself. I had to drag myself out of the deep black hole and try and get some purpose back to my life.

Thirsty Leopard
Thirsty Leopard

I got my pad and my pencils out and started to draw. It was something that I could do in bed on my worst days, and curled up in the chair if I felt up to getting up. I could pick it up and put it down whenever I needed to.

Once I realised it was something I could focus on, I started to set myself goals, and challenges, and aims for the future. I started to show my friends online what I’d drawn and got an amazing response from them. It gave me the confidence to start using coloured pencils.

I was determined to improve my techniques, and succeed in my goal to create photorealistic drawings. I worked long and hard, knowing that if I put the effort in, I would get the results I wanted. I also knew that it was going to be a long process, there were days that I could only manage 10 minutes before I had to stop and sleep, and other days I could manage a couple of hours, but I didn’t give up.

Pet Drawing Commission
Pet Commission

As my work improved my friends started to ask for portraits of their pets. I was thrilled that people liked my work enough to want it in their houses. Slowly but surely more and more people came to me wanting work, and my work was getting noticed in more and more places.

In the last 18 months I’ve had my work published in several coloured pencil magazines, I’ve had an article published about taking my own photography for reference photos, and I have 2 exhibitions booked in galleries in the next 12 months. I’ve also brought out my own range of products.

I’m attending my first Craft Fair in August, which will be the first of many fairs and markets that I will be attending.

I still have bad days, days that I can’t face anything more than dragging myself out of bed and down the stairs, just to curl up on the chair and sleep in my pyjamas, and then there are days that I feel well enough to have a shower and get dressed, which is a huge deal for me. Mornings and evenings are hard for me as they are the most painful times of the day, but I manage the best that I can, and when I feel upto drawing I take full advantage of it, and try and create something beautiful.

I feel very lucky, because lots of opportunities are coming my way and I have a very bright future to look forward too, with lots of exciting plans in the pipeline too. None of this would have happened if I hadn’t become disabled, as I would still have been working full time and wouldn’t of had the time to put into my drawing the time that was needed to have been put in to get to the stage that I’m at now.

Hungry Wolf drawing
Hungry Wolf

If I could give anyone that lives through disability or chronic illness one piece of advice, it’s never to give up on yourself or your abilities to achieve anything that you want to. You might have to take a different approach, or work in a different way, but it’s still achievable. You will go though hard times, and you might lose sight of the positives in your life, but they will still be there, and with hard work and perseverance, you can achieve anything that you set your mind to. Take the rough with the smooth, and live your life to the best of your abilities, whatever they are.

Believe in your dreams, and they will come true!

VISIT ROZ’S SHOP

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My Story – Crafting through Ulcerative Colitis

I’m Jane Elizabeth Higgins. I was Jane Elizabeth Chandler until last year when I Married the gorgeous Mr Higgins, who loves and supports me through sickness and health.

I am so happy to have found this beautiful community of Crafties. I can’t actually express in words the emotions I felt when I read the welcome message from Karen and realised how perfect this community is for me.

I was diagnosed with Ulcerative Colitis in 2002. This is an Inflammatory Bowel Disease which causes diarrhoea, bloody stools, weight loss, pain, fatigue, depression, anxiety and incontinence. After a few years and lots of medications, including immunosuppressant’s I became steroid dependant and in need of surgery in 2009. More than half a dozen surgeries later, a stoma, ongoing complications, losing my job, more weight loss and countless hospital stays, I had my final operation in 2012. I now have an ileoanal pouch. Since then I have developed extreme Fatigue, Fibromyalgia, Nerve Damage and Joint Pain.

Colourful Jasper Heart Pendant
Colourful Jasper Heart Pendant

While off sick recovering from Pouchitis (inflammation of my pouch) and Anxiety in 2014, I joined a local craft workshop. It was here that I started making jewellery. I loved it straight away. I have always loved practical activities and as a primary school teacher I enjoy teaching the practical subjects such as science and design technology. The jewellery making fulfilled a need in me to create; its very therapeutic. I began making more and more things and trying different techniques. My favourite is beading. It soon became clear that I would have to give up teaching altogether. Soon after that I started my own business. It allows me to work when I’m able and rest when I need to.

I make IBD awareness jewellery to raise money for Crohn’s and Colitis UK (CCUK), a national charity which has helped me a great deal on my journey. I also make awareness bracelets in aide of Children’s Liver Disease Foundation (CLDF), GoGold for childhood cancer (money raised goes to Clic Sargent) and Sickle Cell disease (Sicklekan), as I have people who are close to me who are affected by these conditions.

Children’s Liver Disease Awareness Bracelet
Children’s Liver Disease Awareness Bracelet

I also run jewellery making parties and workshops for children and adults. These are a great opportunity for me to practice my two loves of teaching and jewellery making.

I have opened my shop with three of my awareness bracelets. They are each only £15 and £5 from each purchase goes to the health charity associated with it. I make awareness jewellery for health causes close to my heart. I have a personal story to tell about each association and I will share these with you over the coming weeks.

Until then, have a look at and enjoy the beautiful bracelets. I will chat with you again soon.

Jane <3

VISIT MY SHOP

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Caring in Chaos

Caring carer caregivers

I’m lucky to be a carer for two amazing people!!! My son and my Mum!

My son was diagnosed with Aspergers/ High functioning Autism, at age 7. We have had a tough old road, now he is 17, done his GCSE’s and is now at college! Safe to say I am one proud Mum!

In May 2015 I became carer for my Mum. She has chronic Arthritis both Rheumatoid and Osteo, which means she needs lots of help. She had to take early retirement and move in with me and my son.

I took up embroidery and cross stitch originally to do something creative.

Its helps take my mind off our crazy merry go round life of hospital appointments, meetings, therapy and general house stuff.

I suffer with Depression and PTSD, due to a previous abusive relationship. So stitching helps and keeps me sane, or not as the case may be 🙂

Autism spectrum top sweatshirt hoodie
Autism spectrum hoodie

For a long time I had thought about running my own business, but just didn’t know what to do. One day Mum saw and advert for a embroidery machine, “you could do that!” she said. So, along came this huge machine which initially I was terrified of! (I had only done hand embroidery up to that point!!). Luckily my computer whizz and all things technical son came to the rescue!

I had had the machine for a month and just looked at it in awe! Half term was all that was needed, by the end of the week he had machine embroidery sussed, taught me and so my learning curve began!

Eventually after several months I braved it and in January of this year (2016) I jumped in. Mum and my boy love the things I make and look forward to seeing the new designs and products, Mum especially as she gets to keep the seconds!

So, here I am, self-employed and loving every minute!

VISIT MY SHOP

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HOW TO: Have Energy-Conserving Great HAIR

Spoon saving hair styling when chronically ill with fatigue

HOW TO style HAIR with minimal energy and so we can save energy for the important stuff!

(I know hair loss is very common with Chronic Illness. In fact, I lost 2/3rd of my hair a few years back and had to cut it all off. Please do not be discouraged if you are experiencing this, I know I was, but it is very possible your hair will come back.)

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A Desperate Plea…

writing to doctor about prolapse

Below is an email I sent this morning to a specialist I saw last year. It’s not professional. It’s not the right way to go about things. But it’s real. It’s my life. It’s the level of desperate I’m now at. I’m not sharing this for sympathy. I’m sharing it to highlight the thousands of people out there who are just like me, living with these problems. Sharing this isn’t easy. It’s hard not to be embarrassed and disgusted with myself. These are issues often kept behind closed doors. But I’m opening them. I refused to be ashamed. It’s not my fault I have to live like this.

If someone told you they had a prolapse, would you think it a big deal? Would you expect it to seep into every aspect of their lives? Would you realise that it could be on their mind of every second of every minute of every day? Probably not. Well… maybe this may open your eyes to what it’s really like…

Hello Dr ##1##,

I’m sorry to contact you directly, but I’m unsure what to do. I feel I have to take things into my own hands.

I have had my surgery in October with Dr ##2##. She addressed the cystocele and prolapsed uterus by performing a vaginal hysterectomy and anterior prolapse repair. No mesh.

However she refused to touch my rectocele, which continues to get worse and worse. I now cannot pass wind without pressing on my perineum, or bulge within my vagina. The only time I pass any stool is when my laxatives cause me to have violent and painful loose stool. However some of this always collects in the pockets of bowel and quickly hardens and blocks it. Mostly I have to manually remove my stool. This involves putting a thumb inside my vagina and two fingers in a v around my anus (which when I need a motion bulges out to varying degrees).

I manipulate the whole area in order to push the stool out, as my lower section of bowel doesn’t push at all. Often times I then have to insert a digit into my back passage to try and help the process along. Inside is a large cavern. It feels almost flying saucer shaped. (Sorry that’s all I could think of to describe it) I have to sweep my finger around to collect stool and mucus. Above this area it seems to become tighter again, but still won’t push, though the muscles around do clench. Since my surgery however there also seems to be a large grissly bulge protruding into that upper area.

Unless the laxatives cause me to have severe cramping I very rarely can tell if I need to pass a motion anymore. The only things that alert me are bloating, a heavy feeling, and being unable to urinate. This also happens with the large amounts of trapped wind I get. You don’t realise how much you must naturally pass throughout the day until you can’t do it anymore and it’s all stuck. Let me tell you, there’s a lot! I could power a wind farm. The only way I can tell which it is is to feel whether my bulge is full of gas or stool. Then get it out.

Every single time I go to the toilet is an ordeal. I’m left feeling in pain, bruised and without any dignity. Because of my POTS and EDS the positions I get myself in often cause my joints to hurt and sublux. My legs go completely numb and my heart fluctuates. I also get hot sweats and dizziness. All this combined means my husband often has no choice but to supervise me on the toilet and help me back to bed. I can be on there an hour or more at a time, and bed is always where I end up. It takes so much out of me. Plus, I never go just once. Often there’s at least three trips to actually get the entire stool out.

I have ended up in tears, wishing for an ostomy over this life. How crazy is that? I know it’s crazy. But I just cannot go on like this.

The only thing that Dr ##3## can think of is regular irrigation. Possibly even weekly, from now until kingdom come, to get my bowel cleared and hope that in between I feel ok. He said he doesn’t believe I have Crohns. There’s no sign of it on any recent test. But he told me, if it’s IBS it’s the strangest and most aggressive type he’s ever seen.

Please will you help me. Dr ##2## was lovely. But you are the best in colorectal surgery. I know I’m a complicated case. I followed your instructions. I saw a different doctor. I did everything you told me to. Now, months down the line, the problem I came in with is just getting worse and worse. You wrote to me saying if I was still having problems to get back in touch. Whilst writing this letter I got a call back from a Secretary. She told me my GP must write in and I have to wait all over again. I feel like I’ve been waiting forever. I feel like the main issue I need help with was pushed aside and I’m just left here to suffer. Now to hear I’m starting from scratch is devastating.

My in laws have booked to take us to Disney in early 2018. They’ve already put it back two years because of my health. They can’t move it again. How do I tell my kids I can’t go because I can’t go to the toilet like a human being and it’s ruining my life? I struggle to even wear clothes due to the extreme bloating. How do I tell them that after all the waiting and the surgery I am right to the back of the pack again?

I know I’m just another face in a sea of patients begging for your help. But I took your advice. Please, now will you try to help me? I’m not too proud to beg.

If you got to the end of this letter I appreciate it. Most doctors would bin it immediately. I really am sorry for contacting you directly. But desperate times and all that. Also, Dr ##2## really was lovely and treat me very well. She just hasn’t fixed the thing that most impacts my life.

Any advice you have would be greatly appreciated.

Regards,

J

Please. If you know of anyone with these problems, don’t make fun or make light. Be aware of the fact that these issues can make you feel sub human and worthless. If, like me, you are going through this. Don’t just sit back and wait in line. Dig your heels in and kick up a fuss. Push hard for the treatment you need!!

If by some miracle any Doctors happen to read this blog. Well, to you I ask this. Please try to understand that prolapse can impact a persons entire life. Many people in support groups Im in are teetering on the edge of a complete breakdown. Treat us with respect and care. But also with a sense of urgency. The longer we live like this, the less human we feel. 

UPDATE: Jennie’s doctor has responded and is asking his Secretary to book her in his clinic 🙂 Watch this space….

Beautifully Written by Jennie Louise Smales from This Little Life of Mine.

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There is another way…

medipen review Cannabis oil CBD Oil

In the last few months my levels of pain and exhaustion have hit a whole new high. This has left me pretty much bedbound most days. Then awake and restless at night. Alongside all that, my Gastroparesis has flared, meaning I’m nauseous almost all the time. My stomach feels full and bloated and eating, or even drinking, causes severe pain. When everything piles up like this it’s hard to cope. I found myself breaking down and sobbing on an all too regular basis.

I’m already taking slow release Tramadol, Paracetamol and Codeine for my pain. I also have Gabapentin for nerve pain and other issues.

Please note, it is not generally advisable to take Tramadol and Codeine together. I have special permission from the pain clinic and have been given clear instructions on safe dosage. Please don’t ever take medication that is not prescribed to you, or at a higher dose than prescribed by your GP.

I cannot take anything Ibuprofen based due to my IBD, nor can I take many of the anti nausea medications that are on the market. During my last Gastroparesis flare my GP tried me on many of these medications, they either didn’t work, upset my bowel, or worse. What could be worse? Giving me the symptoms of a brain tumour, that’s what. My body reacts to things in very weird and wonderful ways. Waiting for my test results to come back after I’d been told I was displaying all the signs of a prolactinoma was one of the most terrifying experiences of my life, one which I do not intend to repeat.

So, as you can imagine, my options are now pretty limited. Basically there’s only one thing to move up to. Morphine. Be it tablet or patch form, it doesn’t matter. That’s the only thing left. I discussed this with my husband. Yes, I want to feel better. Yes, I want to be up and about more. But Morphine? I’m thirty years old. Do I really want to put my, already dysfunctional body, through that? I know that Morphine is a strong pain relieving option. But I also know that any pain relief doesn’t seem as effective on me as it is on others, this could be down to my dodgy collagen. Even in hospital when I’ve been given Morphine intravenously, it’s not had a major effect. I never ever get spaced out or super relaxed. It just doesn’t affect me that strongly. So I’d be putting my body through all that stress, for a minimal effect. I don’t think it’s worth it.

But what other choice did I have? None. Or so I thought. Soon after our conversation my husband saw an article about the Medipen which he sent over to me. Basically the Medipen is a vape machine which uses extracts from the Cannabis plant, combined with coconut oil. The extracts are completely devoid of any of the chemicals which cause the feeling of being ‘high’. They purely contain the chemical which has the most benefits, CBD. I’m not going to lie, I was wary. Very wary. Cannabis has a lot of stigma around it. Then add to this the fact that you inhale it in a vape machine, meaning you look like you’re smoking. That was too much.

I’m not anti Cannabis. I don’t believe it’s a big evil drug that is bringing it to its knees. Honestly I don’t. Used in the correct way, I can see why it could be popular. However I am anti smoking. I do not smoke, have never smoked, and have no desire to. I’m not going to lecture people about their life choices, but in my opinion my body has enough wrong with it without me adding to the list. When you think of Cannabis that’s what comes to mind. Smoke. Lots and lots of smoke. Spliffs, bongs, hash brownies. But mostly dingy rooms full of pungent acrid smoke. That’s the stereotype. The stereotype that is widely spread and etched into people’s minds. But that’s not me. I’m a mother. A none smoker. A disabled member of the community just trying to make the best of my life.

My initial reaction to the Medipen wasn’t great. But I read the article. I researched. I looked on their website. Mostly I checked out the reviews. Page after page after page of people thanking the company. People with Cancer, MS, Chronic Pain, Chronic Fatigue, Insomnia and bowel complaints, all were seeing results! They were gushing about their great experiences. Better sleep, less pain, more energy. The reviews were astounding. Many even called it life changing. My viewpoint started to shift. Reluctantly I discussed it with my doctor. Terrified by his reaction. What if he thought I was a pot head? I couldn’t believe my ears when he told me to go for it! Recently another patient of his had tried a similar product and had excellent results. He agreed it was time I started thinking outside the box in order to improve my day to day life. Wow! The (unofficial) go ahead from my doctor!

That night I contacted the company and arranged for my sample. I’ve been anxiously waiting for it ever since. Desperate to try it, but afraid the hype was too much to be true. Honestly, I was afraid to even hope. As for the stigma? I put it out of my mind. I told myself, who cares what other people think?! I need an improvement in my life. I cannot keep going like this, and I don’t want to take opiates. Besides, as with stigma about anything, we just need to raise our voices and educate. Show people they’re wrong. Highlight the true facts of the matter.

My Medipen arrived this morning. I’m looking forward to seeing how I go with it, and updating you all on my experiences; from my initial reactions (including reactions to it from those around me) to the results of longer term use. Here’s hoping it’s all positive!! I’m just happy I actually have something to place my hope in for once.

medipen review Cannabis oil CBD Oil
Medipen has arrived!

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Jennifer, Monty and their story

Spina Bifida, Jennifer Quinn

Throughout the world there are thousands upon thousands of people living below the radar. Struggling just to exist, let alone be ‘functioning’ members of the community. These people, people like me, live with disability. Together we form a huge portion of the global community, but with so few of us in the public eye it’s hard to get our stories out there. So that’s what I’m hoping to do. I’d love to give you a window into our lives, a hearty welcome and a good look around!

Jennifer Quinn Spina Bifida disability
Jennifer looking snazzy in her sunnies.

Jennifer is a forty two year old lady who has suffered with Spina Bifida since birth. Basically her spine did not form properly, causing her to live with a host of health problems throughout her life. These include not only crippling pain and loss of sensation, but also mobility issues. For a long time Jennifer fought hard to get around on crutches, until eventually her body could not manage anymore. She is now permanently wheelchair bound.

Spina Bifida Carer
You don’t need a cape to be a super hero.

As Jennifer doesn’t have the upper body strength to propel herself, she relies on others to get her about. Luckily she has a wonderful husband who loves her dearly. He happily devotes himself to caring for her, cooking her meals and taking her anywhere she needs. It takes a special bond to love through severe disability, and they have it. As I’m sure you can imagine, living in constant pain and exhaustion is not easy. For Jennifer, as with many of us struggling with disabilities, depression has dogged her life. Trying its best to creep it’s way into her psyche on even the brightest of days. But she does not let it win!

Spina Bifida Jennifer Quinn Story
The lovely Monty, smiling with Mum

Jennifer has filled her life with so much love its overflowing. How? With her beautiful pooches and pussy cats, who brighten her days with their bouncy personalities and unwavering adoration. One such companion was Monty. A cheerful West Highland Terrier, he was Jennifer’s constant companion of seventeen years. After seeing her through both good times and bad, he said his goodbyes and grew his Angel wings in August of 2015. That loss was one of the toughest to go through, and coming to terms with it has been hard.

You’d think that with so much difficulty in her life Jennifer would be bitter? But you couldn’t be further from the truth. As soon as you speak to her you feel an eternal optimism exuding from her. This strong woman will not let anything bring her down for long. So much so, that rather than wallow in grief, she has turned the harrowing loss of her beloved pet into something positive. Jennifer has chosen to craft. She crafts through pain. She crafts through depression. She crafts through the melancholy of day after day of living with disability. In fact, she’s made so much that she’s even opened her own shop, Monty’s Makes.

Spina Bifida Selling handmade crafts Montys Makes
A handful of items to be found in Jennifer’s shop

Jennifer sells a whole range of beautiful bespoke crafts. Each item can take her days, if not weeks to complete. She does all her crafts sitting down, but due to pain in her back she has to do several short sessions on and one piece. To keep things interesting Jennifer likes to hop from piece to piece. When asked about her crafting she says:

It might take a while to get things done, but I never give up. I enjoy it as it helps me to take things not so seriously.

When visiting Jennifer’s shop you are immediately hit by the sheer volume of beautiful work she has created. From the kitch hand sewn items, to the funky jewellery. There’s something for everyone, not forgetting of course a good dose of doggy themed makes. How could she not. Here’s a few of my favourite pieces:

Charity Blue chipped bangle bracelet
Blue chipped bracelet

I love the jade green and aquamarine hues of this beautiful bracelet. Being a bangle its so easy to pop on, perfect for someone who struggles with fine motor skills like me! Each loop of the bangle has had two of the shimmering beads attached by hand, creating a truly decadent and stunning piece of jewellery. My jaw literally hit the floor when I saw the minuscule price tag. It’s definitely one for my Christmas list!

Felt Birds Decorations for Charity
2 Felt Bird Decorations

A sucker for anything kitch I adore these little felt birds. I can imagine them adorning the nursery of a well loved newborn. Or dancing merrily on a cot mobile to help soothe baby to sleep. Alternatively they’d be great looped through the Zips on handbags as a quirky adornment, looking cool and making the zip easier to grab at the same time. Another feature I love is that Jennifer allows her customers to customise these and many other items, offering a variety of colour choices.

Book or Tablet cushion holder – purple floral pattern
Book or tablet cushion

Finally I have to say that I ADORE this iPad holder. With the issues I have in my wrists I really struggle to hold my iPad. This is not great as I spend the majority of many days in bed, with only my iPad for company. Sometimes the pain is too bad to even hold it. My husband did buy me a small plastic stand, but due to resting it on myself, I often end up with my iPad smacking me in the face. No fun. This is absolutely perfect!! It’s sturdy and pretty and everything I could want in an iPad stand! Even better I have no doubt it could be used for mirrors and even books. I’m really feeling all the love for this item!!

Just when I really thought my admiration for the drive and determination shown by Jennifer could go no further, she surprises me once more. Because Jennifer takes no profit whatsoever from Monty’s Makes. You see in 2002, after a harrowing four year battle with lung cancer Jennifer lost her Father. Then last New Years Eve more sorrow befell her family when her sister in law sadly passed from Breast Cancer. Even with all her own hurdles Jennifer couldn’t sit back and do nothing. So that was why she decided to create her shop and donate all profits to Cancer research. And what does Jennifer have to say about her wonderful gesture?

I just wanted to help others, like I’ve been helped all my life.

If you too want to help others please take a look through Monty’s Makes and see if anything catches your eye. Otherwise feel free to make a donation at Cancer Research UK. Jennifer would really appreciate it.

**Beautifully Written by Jennie Louise Smales from This Little Life of Mine. Please note this is NOT a sponsored post. No money or goods were exchanged for the writing of this post.**

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Becoming Disabled

Becoming Chronically Ill

I remember having a dream as a small child. I was with a circle of adults around a fire and there was something that they were not telling me. I awoke feeling cross and very frustrated and the memory of the dream lingered…

As a young, able-bodied adult, I left home and did a degree in Design Representation (modelmaking). I commuted into London to work in various workshops. I took up Live Roleplaying, Yoga, Tai Chi. Work stress made me change course, learning Reiki on the way. I gained a Diploma in Montessori Directress (preschool education), commuting up to four hours a day.

Marriage, motherhood and moving house followed. Pregnancy was wonderful but my daughter and I are lucky to be here and nobody could tell me exactly why my body went so wrong.

Summer, 2012: I’d brought littl’un to a friend’s birthday party. The garden was full of fun – crafts, facepainting, treats. Whilst my daughter was having a great time as a dinosaur, I grabbed some nibbles and went to chat with the other mums. However, I felt wrong. Dizzy, clumsy, finding it hard to get my words out or find them at all, I sat in the shade quietly promising myself I’d see my GP. This just added to a growing list of niggling little things they couldn’t find a cause for.

I’ll save the whole diagnosis story for another time, though, as what I’d really like to get across is just how disability crept up on me. It was the fatigue that got to me first. I’d had it for years without realising that it wasn’t normal to feel like this. At school, at Uni, it was just put down to growing and learning. My first jobs – commuting, working long hours, surely being this tired upon waking was simply a result of that?

As a new mum, again, exhaustion had an explanation. I’d joke about having ‘mumnesia’ along with the other new mums, but my forgetfulness didn’t go away as my child grew.

I’d walk my daughter to playgroup, to pre-school, down the same village road I still travel. She started school a bit further down the road and one day I noticed that I wasn’t walking straight. I started getting odd sensations or lack of feeling. By July 2014 I was using a walking stick to help me cope with involuntary movements, neuropathic pain and balance issues. by the end of the month I’d discovered how much clearer my head was when I borrowed a supermarket wheelchair. It also reduced the myoclonic jerks. By that September I was using a mobility scooter for most of the school run trips and by the following September I’d bought my Smartcrutches, having finally been diagnosed with EDS in August 2015 (confirmed by a geneticist Dec ’15).

I had to be patient, probing, persistent and proactive to help the medical professionals around me arrive at the complex answer to that first question ‘Why am I always a bit dizzy?’ and the cascade of other questions that followed. I’ve only just (in May 2016) been diagnosed with PoTS on top of the EDS etc.

Thankfully, the dizziness is manageable, the involuntary movements have all but gone (it made beadwork nigh impossible!), I’m receiving appropriate treatment, learning to pace well, brace appropriately and eat more healthily. I have to thank the online patient communities for a huge amount of support, information, understanding and genuine caring. You yourself might have spared a moment to write to me, hidden behind one of my aliases. Thankyou, whoever you may be, for your en-courage-ment. (I needed you to notice that word within a word there).

For the first 40 years of my life I had no idea that I’d been born with a predisposition to disabilty. I only had that vague, intuitive feeling since I was young that something was different about me. I’ve learned to love who I am (“…a very interesting person” I’ve been told more than once) and I embrace my life just as it is.

Yes, I have become disabled but through my journey of self discovery, I have also become empowered.

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Why Mommy Can’t Dance

Mommy Can't Dance book - Help children understand Chronic Illness, Katie Carone

Here’s my story (reposted from My Website Mommy Can’t Dance)

Spanish-style music was playing in the background. It was unusually hot for October, but I could feel a slight breeze on my cheek. The nerves in my limbs were twitching like they wanted to get up and run yet felt like they were being held down by cement. My eyes were closed, but I could see lights dancing and swirling like waves of fireworks in my head. I vaguely heard a man walk by and comment in my direction, “I guess you can have too much fun.”

This was me—sprawled out on a table in the wine garden at Disney’s California Adventure Park. It was the nearest place I could get to after exiting a ride with my kids and sensing I was going to collapse. It felt like I was in a dream. I had no perception of time or the fact that I had been non-responsive for over two hours.

The paramedics that huddled around me were prodding me and asking me questions, but they seemed so far away and I was just too tired to answer. Too tired to open my eyes. Too tired to move my leg that had fallen asleep some time ago. In the back of my head I could hear a frantic voice whispering, “Something is very wrong!” But at that moment I was just too tired to even care.

Little did I know that this incident was the beginning of an illness turned disability that would change my life.

Postural Orthostatic Tachycardia Syndrome (POTS)

So what was this mystery illness? Postural Orthostatic Tachycardia Syndrome, also known as POTS. As my doctor explained, upon standing my heart rate increases much more than is normal. While this is a defining characteristic of my condition, it is not just my heart rate that is altered. POTS is a dysautonomic disorder. It affects the autonomic nervous system, which controls our bodily functions that we don’t usually have to think about, like heart rate, circulation, blood pressure, breathing, digestion, temperature, hormone production, etc. POTS can be triggered suddenly by a trauma or viral infection, as it was in my case. (I’d had a sore throat for a week and been under a lot of stress from work as we embarked on our family vacation.)

While many of my symptoms are present all the time, they are amplified when I’m sitting up and even worse when standing. Because of poor circulation and low blood volume my brain suffers from not enough blood and oxygen. My symptoms include brain fog, dizziness, migraines, chest pain, nausea and other gastric issues, temperature control problems, and extreme fatigue and lethargy. I get overstimulated quickly– movement, light, and especially noise really affect me. Additionally, my body overproduces adrenaline, causing intense tremors and muscle spasms.

Overnight I went from being a relatively healthy, active person to someone who could barely get out of bed.

Chronic Illness Affects the Whole Family

Katie Carone, Mommy Can't Dance
Katie Carone
Mommy Can’t Dance

I have always been a go-getter and an overachiever– from dancing 4-6 hours a day and attaining valedictorian in high school to an adulthood of teaching group fitness classes, owning and operating a small business, and being a wife and a mother of four. To lose my mobility and functionality was devastating.

This condition was not just life-altering for me, it affected my whole family. I could no longer take my kids out for the adventures we loved, like going to the children’s museum or hiking in the mountains. I couldn’t go to important events like music concerts, dance recitals, or preschool programs. And the day-to-day limitations were even harder to accept. I could no longer make dinner, help kids with homework, or get them ready for school or bed. I oftentimes could not even get myself out of bed without collapsing. (My husband has found me on the bathroom floor more times than I care to admit.)

I was battling to come to grips with my new reality. But I was not the only one. My kids were also struggling to comprehend why I couldn’t do what I used to do.

Our family has a tradition of taking turns sharing good news and bad news each night at dinner. The nights that I could make it to the dinner table, I noticed a trend in the news my kids shared. My four-year-old twins started repeating the same news night after night. “My good news is that I love mommy. My bad news is that I miss mommy.” Even my 10-year-old daughter would say, “My good news is that mom was able to come out for dinner. My bad news is that mom is still sick.”

I have vivid memories of a meltdown my daughter and I had one evening as she was preparing for her dance recital. She came into my room so I could do her hair, yet I couldn’t even sit up on the edge of my bed long enough to do it—let alone make it to the recital.

Over the holidays, one of my twins rushed into my room so excited for me to come see the Christmas tree he had helped decorate in the basement. After five minutes of him tugging on my arm begging me to come, and me trying to explain why I couldn’t simply get up and walk down the stairs, we both ended up in tears.

These are just a few of many examples.

Mommy Can’t Dance

As a mom, it is no fun to feel physically awful, but it is worse to know that your kids are suffering too. I hated that my illness was affecting my children. I needed a way to help them understand that my illness and inability to do things for them or with them in no way affected my love for them. Additionally, any chronic illness brings with it feelings of helplessness for the patient and the loved ones. I wanted my kids to find ways that they could feel helpful and loved. Thus, the book Mommy Can’t Dance was born.

While this book is near and dear to my heart, I recognize that I am not the only mom struggling with chronic illness. I hope this book can help other mothers and children that are similarly struggling.

The children’s book “Mommy Can’t Dance” is available at:

Mommy Can't Dance book - Help children understand Chronic IllnessAvailable to buy via Amazon Paperback or Kindle.

For UK orders BUY BOOK here

For USA orders BUY BOOK here

CreateSpace Store
Support Dysautonomia International

In an effort to further the advocacy and research on POTS, the illustrator and I are donating all proceeds of the book Mommy Can’t Dance to Dysautonomia International a 501(c)(3) non-profit founded by patients, caregivers, physicians and researchers dedicated to assisting people living with various forms of dysautonomia.

http://www.dysautonomiainternational.org/

Happy Endings?

While I wish I could write a fairytale ending to my personal story, that is simply not the case. I have found a few medications that have helped, and I continue to pursue additional treatment options through trial and error. Like many others who suffer with chronic illness, I understand that this may be a lifelong condition. However, I refuse to give up or give in, and I hope to someday report that mommy can dance again.

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Would I ever be able to sing and dance again?

Amy Oestreicher artist, Gutless and Grateful

It all started with a dream.

I grew up doing musical theatre.

Let me rephrase that. I grew up thinking my life was a musical. Call it the “theatre bug”, call me a “drama queen” or a great big ham – I lived for the world of the stage. For me, singing and acting were ways I could connect with the world around me. When I took a deep, grounded breath from my gut, I sang what my heart longed to express. I found comfort in the words of my favorite composers. I read scripts like they were novels. I would play with my playbills from various shows I had seen like they were my Barbie dolls. Through theatre, I had a place in this world. I could make believe by inserting myself into characters from every era, situation and mindset, while still expressing my own individuality.

I was the kid who got sent to the principal’s office because when the teacher left the room, I would jump on her desk and start tap-dancing. I was the girl who forced every unwilling classmate to join me in a Les Miserables medley, assigning them their designated parts to pass the 30-minute school bus ride.

Amy Oestreicher starring in her one-woman musical, “Gutless and Grateful.”
Amy starring in her one-woman musical
“Gutless and Grateful.”

Even all the way up to high school, I was the theatre-girl. It was my identity, my passion, my livelihood. I sacrificed my social life and gave up many opportunities to immerse myself in what I loved.

I’ve always been warned not to put all of my eggs in one basket, but theatre ran through my veins – it was all I thought about, lived and dreamed. I’d write songs in my assignment notebook as I waited for the school bell to ring, then hop on the train to the next open call I’d read about in Backstage. When I fought with my brothers, I could only debate with them if we could do in the spirit of a musical theatre duet. They weren’t so keen on that.

So what do you do when you’ve invested everything into your passion and you can’t follow it anymore? I’ve always thought about what would a world-concert pianist would do if he injured his hand, or a dancer breaking a leg…

…but sprains heal and wounds can eventually mend. Dire circumstances felt much more long lasting; when at 18 I awoke from a coma. Although the medical staff—that suddenly became everyday faces—was more concerned about keeping my organs and me alive, I was still trying to grapple with one frightening new concern:

Would I ever be able to sing and dance on stage again?

With a ventilator and a tracheotomy, I couldn’t even talk. From months of bed-rest, the first time I was able to stand up, I was alarmed at how they trembled, as if my legs were Jell-O. I lost the energy to even think about what I loved, and being unable to eat or drink in these new medical circumstances turned my once-steady focus to mush and irritability.

I remember asking every person I could find in the hospital if they thought I would ever be able to sing and dance again. I was faced with many apologetic “I don’t knows”, sighs, shrugs, and awkward changing of the topic. However, I remember one occupational therapist gave me words that to her, felt like words of encouragement. She looked at me compassionately, and said, “You never know – the human body is amazing. I had one patient who showed no signs of hope, and a year later, when he was discharged, he only needed a wheelchair!”

(These were not exactly the words of encouragement I was looking for.)

With time, patience, and dogged determination, I was eventually discharged from the hospital. What I’m glossing over are the multitudes of surgeries, setbacks and frustrations, because what was the most important was my passion – I never forgot how I missed the stage. Even not being able to talk or stand up on my own, I still visualized me singing and dancing. Without theatre, I felt disconnected, purposeless, a has-been. I missed the vibrant girl I remembered being the first to sign up for auditions, now condemned to a realm of medical isolation.

I had always had a dream of combining song and dialogue in a show of my own design. I love the idea of storytelling through theatre, but as a teen, I didn’t really have much of a story to tell. But sometimes, a setback is an opportunity in disguise. Suddenly, I had a tale of hurdles, triumph, and heart.

Amy Oestreicher artist, Gutless and GratefulEight years after my coma, I was finally headed towards a life of medical stability. I learned through experience that things can heal with time, and that’s not always the prettiest or easiest way. It was an extremely difficult journey, yet when I started to put together a musical of my life, things felt like they had happened for a reason. Now I had a story to tell, a message to share.

My one-woman musical autobiography, Gutless & Grateful, started out as stapled pages of my journal – a few pages from the thousands of journal entries I had completed when unable to eat or drink for years. I selected 16 songs—some of which I had written – that had always resonated with my journey and me, and loosely strung them together to sing for my own therapy. I’d perform Gutless & Grateful for my parents, my dogs, but mostly for myself. Through the songs, I could allow myself a safe place to feel the charged emotions I was still trying to process from years of medical trauma.


I called it my “world in a binder”. My parents called it “Amy’s little play.” It was no surprise when I had many looks of concern and gentle warnings when I decided to book a theatre in New York for my world premiere!

I performed Gutless & Grateful for the first time in NYC in October 2012. It was a frightening, bold, vulnerable, and breathtaking experience. In it, I told everything – the pain, the medical, the joy, the infuriating – with music, drama, and humor, most importantly. I had played “roles” before, but for the first time, I was honestly revealing my own medical and emotional struggles for hundreds of strangers every night. It was a risk to lay my soul bare, but the reward was in how my own vulnerability caused others to become vulnerable and moved by my own struggles.

Since then, I’ve been performing it in theatres, hospitals, and groups in need of any kind of inspiration and encouragement. When I realized how combining powerful firsthand experience could transform lives, I developed my little-show-that-could into a mental health advocacy and sexual assault prevention program for students. Nearly losing my life at 18 years old, I’m now reaching out to students at that same pivotal point in their own lives.

Medically, my life is far from perfect, but now when a surgery goes wrong, I use it as more material for my show – if we cant learn to laugh from hardship, we can’t learn anything. And for me, when I learn, I feel alive – that just as trees grow, change and evolve with every season, I can too.
Amy Oestreicher artist, Gutless and GratefulThrough Gutless & Grateful, I’m sharing my story and helping others find the gifts and the gratitude in the hardships. And in healing other people, I heal my own self a bit more every day. I’m not there yet, but just like my show – I’m on the road.

As a performer, all I want to do is give back to the world. Being up on stage and singing is one part of the joy, but what brings the process full circle is knowing that somewhere in the audience, I am affecting someone and making them think in a different way. That is the power of theatre – stirring you to see things differently. Doing what I love, my passion once again can freely flow through my veins, and I’m a person now, not just a patient or a medical miracle. Passion may not heal 27 surgeries, but passion has healed my heart. My passion has re-anchored me in who I am. And for that, I am Gutlessly Grateful.

Amy Oestreicher

Speaker, Artist, Author, Performer, Playwright, Actress, Survivor, Writer for Huffington Post

*Celebrating Life’s Beautiful Detours*

#LoveMyDetour

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The Real Me

The real me EDS zebra Ehlers-Danlos Syndrome Blog

Sally-Ann EDS Ehler-Danlos SyndromeI’ve always loved finding about about myself. I was a shy child with hardly any dress sense (though very sensitive to irritating clothes). I matured late, have always been something of a tomboy and absolutely love stories, be it in books, in films or making them up with friends.

I had a career as a professional modelmaker and another in preschool education as a Montessori Directress. Unfortunately, despite however much I loved what I did, I could never seem to physically do it for long. There was an invisible barrier that I kept hitting time and again.

I look back and wonder how I managed to do what I did? With the companionship of a loving partner that I’ve known since our college days, a wonderful family and finding my creative outlet in Live Roleplaying for twenty years. I learned Reiki to cope with stress and became a Reiki Teacher.

A few years ago though, a cascade of symptoms began. Dizziness, fatigue, clumsiness, odd sensations…the list went on. It took three years to reach the root of all my problems – even ones from my childhood and young adult life finally got explained.

At first, I thought it was MS. It looked ever so much like it but the MRI said ‘within normal limits’ and the Neurologist said ‘Functional Neurological Disorder’. What’s that? In a nutshell, symptoms without a clearly discernable cause. Go to FNDHope to learn more.

After that, it was Chronic Fatigue Syndrome, for which I did a very good OT led therapy course and made a group of friends. We still meet up when we can. Generalised Anxiety Disorder along with historical (i.e. in childhood) Social Anxiety Disorder was diagnosed next.

Eventually, a trip to orthotics to get some new insoles that I’d been prescribed after the weight of pregnancy left my feet a funny shape, led to me being told – for the first time in my life – that I was hypermobile. Sure, Yoga and Tai Chi teachers had remarked on my flexibility and I just took it as a compliment, a positive trait. I had no idea…

The slew of symptoms kept increasing, my mobility kept decreasing, my cognitive abilities kept glitching and I had to know why. So, I chatted on forums. I researched. I looked for the right words to craft the best questions to present to my GP. I printed out information and asked his opinion. My ferreting of information and determination to know what my body was up to finally led me, at the age of 41, to get a confirmed diagnosis of EDS (Ehlers-Danlos Syndrome). That in turn led to a realisation that I just might be autistic (my doc said “Oh gosh, yes!” when I asked if I might have Asperger’s). I’m still waiting on that one.

Sally-Ann Zebras Bizarre EDSSo, in the past eight years I have survived a perilous labour (though sadly, my womb did not), become a proud mum, started two online shops, closed a Reiki Practice, gained clarity about my orientation (still happily with my college heartthrob though) and transitioned from able-bodied to disabled. I now do the school-run on two Smartcrutches with braces or my mobility scooter.

This is the real me. I love making jewellery but rarely wear it. I only dress up to do LRP or Steampunk and usually have a less mature hairdo than my now 7 year old. I love making friends but need plenty of solitude. I’m happy to offer my experience to others in the hope that they might find it helpful. Above all and quite aptly, I’m a Conscious Craftie. ♡

Visit my Zebra’s Bazaare shop

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The Search For Diagnosis Continues

Search for Diagnosis

It has been said that I’m just constantly looking for new diagnosis. That I want to be ‘more ill’. I suppose, in a way, this is partially true. I am searching for another diagnosis. Maybe more than one. In fact, I’m devoting a hell of a lot of my life to it. But I don’t want to be more ill. Why would anyone want to be more ill??

You see, I just don’t feel my search is over. From the very beginning I have beaten my own path when it comes to my healthcare. Since being a child I knew there was something drastically wrong, but I was always met with disdain. Many doctors simply felt I was a hypochondriac. Even when I started collapsing I was told, to my face, I’d done it for attention. (Erm, no, floors are hard and painful. That is not how I would get attention thank you very much.) So getting a diagnosis was a huge relief for me. Getting several came as a shock.

You’d think I’d be happy with that. For a few years I was. But then I learned about my conditions. I realised that my body and the way it works does not properly fit the conditions I have. The medications I’ve been given do not control symptoms as they should. Many symptoms I suffer shouldn’t even be there. This does not sit well with me. The final straw has come when one of my diagnosis has been disproven altogether. So many symptoms cannot be explained at all. If they can’t be explained, how can they be treated??

So the search resumes.

Here’s the thing though. I’m not a hypochondriac. Nor am I a martyr to my illness. I do not want to prove myself more ill, nor be more disabled. But giving up on the search is like admitting this is it. This is as good as it gets. My quality of life now is the best it will be.

I’m not willing to do that yet. I want to try everything. Check every possibility and see if there is ANYTHING that can improve my health. That can make me a better mother and wife. I’ll go through the horrible tests. I’ll trial the medications. I’ll put up with the side effects. Because I hope that one of the tests will find the last missing piece of my puzzle. I believe that there’s still something, or someone out there that can help me improve. Even if it’s just 5%. I’ll take that 5% and I’ll use it on my family.

If not? If I’m wrong? Well, at least I’ll know I tried.

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From Private Detective to Carer and Artist

Dog pastel portrait, Bob Ashford

PetsPortraits4u : BobzzartAs a young man I trained for 5 years as a Ladies and Gents hairstylist in Leicester. My hobbies were fishing and Martial arts, i studied the Chinese martial art of Gung Fu and attained a black belt 3rd dan. After a few years I found myself working in Germany which I loved and my wife and children all joined me for a few years. It was on one of the journey’s to Germany that I first became aware of my neck problem, suffering terrific muscle spasms in my neck and shoulders, this continued for many years and the pain levels grew, on our return to England I had many hospital appointments, a CT scan and the diagnosis was “hot spots and irregularities in the C spine” (they gave really detailed diagnosis in the 70’s!). My problem was later diagnosed as Spondylosis or Spondylitis i can’t recall which! I was given Tramadol an opiate based pain killer and other pain relief which helped but did not take away all of the pain.

As the years went by the pain became stronger and ever present as it still is today, I recall myself sitting and crying in pain with my wife’s arms around me on many an evening after I finished work. By this time I had started two new companies away from hairdressing, one a Private Detective Agency the other a Security Company and was working 14/16 hours a day, fortunately I must have a strong constitution as I was always able to go to work and work through or in spite of the pain.

Dog Pastel Portrait, PetsPortraits4u
Dog Pastel Portrait
PetsPortraits4u

I spent several thousands of pounds over the years looking for alternative pain relief, having tried all the obvious, I went for energy healing and did find some relief and at about this time I also found a magic masseuse called Suzanne who like many are, was not afraid to go in deep, she was able to break up the tightly knotted muscles in my neck and shoulder after about a year of weekly visits, this allowed me to actually turn my neck a little from side to side after many years of not being able to, over the next few years my pain slowly went down a rung or two thanks to the healing and the marvellous masseuse I had found.
Having had “some relief” from pain for the first time in many many years I though that I could perhaps also help others that suffered with chronic pain and trained in Tera Mai Reiki Seichem becoming a Tera Mai Reiki Seichem Master and also as a Reconnective healing practitioner, through which I was over the years, able to give relief to many other chronic pain sufferers (but not myself!) mainly using Reconnective Healing energies which seemed more effective than Reiki.

 

Cat Pastel Portrait, PetsPortraits4u
Cat Pastel Portrait
PetsPortraits4u

In my retirement and still in pain 24/7 (and still something of a workaholic!) I caught up with an old school friend on friends reunited, she told me that she had MS of which I knew nothing, some years after this her husband passed away and some months later I was reasonably close to North Wales and arranged to meet with my friend from my school days for a meal, we got on well and I began to learn a little about MS. I started to visit her to help out on occasional weekends and at times when she had multiple medical appointments and seeing what she went through to be able to carry out the simplest little task really had me in awe of her single minded determination, the help visits became more regular and now I am her main carer, staying for perhaps a couple of weeks, enabling her to do the things she enjoys and get regular exercise sessions at the gym, then having a few days break before beginning again.

My friend actually classes herself as lucky, because although she has MS she suffers no pain, lots of other difficulties but no pain for which she is very grateful (but how anyone with MS can consider themselves lucky I don’t know) she has lost the use of her left arm and left leg, and struggles to manage even the simplest task, she has been a yoga teacher for over 30 years and still teaches from her wheel chair having adapted many exercises for chair bound people, she has taken over 700 yoga classes at the Neuro Therapy Centre near Chester and does everything she can to enable her to live an ordinary life. My heart often goes out to her as I see her struggle with a task, but I have now learnt the things that I must let her do herself despite how long it takes her or how difficult it is for her, it’s hard to watch sometimes knowing that I can do it for her, but she needs to do it herself, that was the most difficult thing for me to learn as a carer.

Horse Pastel Portrait, PetsPortraits4u
Horse Pastel Portrait
PetsPortraits4u

I find it very rewarding that I am now able to make life an awful lot easier for her, and enable her to live a normal (ish) life. I have free run of the kitchen which is great! I’m even allowed to do the washing up, although she says she occasionally has to re wash items!! It’s a man thing how we just leave an item with a stain or tiny bit of food on that a woman’s radar spots from 100 yards and we can’t see from six inches!

Anyway I have missed a bit out as before re meeting with my friend after many years, my masseuse told me on several occasions to ask my Doctor to test me for Fibromyalgia, when I finally got round to it I was given a positive diagnosis which explains all of the additional pain I have been getting over the last few years and the horrible tiredness and lack of energy, waking up feeling like a soggy sack, trying to remember what was a dream that you thought you had. It’s known as ‘Fibro Fog’ which is really weird sometimes, so caring for my friend although very difficult at times (as she really does not understand what pain is and why I can be so down and useless one day and ok another!) but it keeps me busy and I get an awful lot of satisfaction from being able to make her life easier, despite having lost the use of her left leg and arm she is always happy, cheerful and smiling. I find it amazing the way she copes with her disability and (most days) really enjoy being there for her.

 

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READER STORY – My colon ruptured on the table!

Karen Hunter - my colon ruptured on operating table
Karen Hunter crohns disease
Karen Hunter
Knits by Karen

When I was 25 I became ill, but they didn’t know what was wrong as all my tests came back clear.  Eventually they took me to theatre to open me up to see what was going on.  My colon ruptured on the table and I woke up with an Ileostomy, it was later discovered that I had Crohn’s Disease.  It was hard to come to terms with having to wear a bag for the rest of my life.  Over the next 13 years I was in and out of hospital for various procedures and operations.

In 2008 I was taken in so they could remove adhesions as they were pulling the stoma back inside me.  The operation went well and I was recovering, until 10 days later, when I was in an awful lot of pain, it turned out my bowel had strangulated itself, so back to theatre where they removed even more of my bowel.  I then contracted MRSA, septicaemia and internal bleeding.  Back to HDU, then transferred to another hospital, my mother was told for a second time that they didn’t think I’d make it through the night.  I did but I was in so much pain, it was put down to going through the operation, but it carried on for months and to this day I am still in constant pain, which has got worse and worse.

I’ve been diagnosed with Abdominal Cutaneous Nerve Entrapment Syndrome.  I am on a very high doses of pain medications, I have had a couple of Nerve Blocks which have given me short periods of pain free but when they wear off the pain comes back.  I have been told that they don’t want to operate on me because of what happened last time.  So this is me for the rest of my life, in constant pain, I haven’t worked since 2008 and it is doubtful that I will ever again.  That is why my crafting is so very important to me.

Knits by Karen - Abdominal Cutaneous Nerve Entrapment SyndromeI have knitted since I was about 5 years old, mostly for my sisters children or for charity.  A neighbour asked me toKaren Hunter - Crohns Disease knit a hat for her son and she was so pleased with it she told me I should be selling them.  It took a lot of persuasion but Knits by Karen was born, I sold by word of mouth.  I managed to get someone to teach me crochet as I’d always wanted to learn and things really took off.  I did a few Craft Fayres and I started getting lots of orders.  To me knitting and crocheting is keeping my brain active, I’m also speaking to people, something I had almost stopped doing when I became ill. I’m not able to do it all the time, but I find if I can concentrate on making a hat or cowl, it gives me something else to think about other than my pain.  I also got a Shih Tzi puppy 4 years ago and he has also helped me immensely.  If I didn’t have my knitting and crochet I really don’t know what my life would be like, a lot worse than it is at the moment, that’s for sure!
Karen Hunter Crohns Disease
crohns disease - Karen Hunter
Karen Hunter - Abdominal Cutaneous Nerve Entrapment Syndrome
Karen Hunter - Crohns Disease

 

 

 

 

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You didn’t just go there?!

I often read blogs about ‘What not to say to the chronically ill.’ On the whole I do think these are helpful for people who want to remain a good friend to those of us who have been blighted with these kinds of issues. (Huge credit to you for trying!! We know we aren’t the easiest bunch to be around at times, or at least I know that.) However I do find these blogs to be a little blanketing. Not all of us are the same. For example, many advise not to tell your chronically ill friend they’re looking good, because it implies you think there’s nothing wrong with them that day etc. Well, sorry to break the mould here folks, but I couldn’t disagree more. You see, most of the time I look far, FAR from good. In fact I look positively haggard. So, if by some miracle I’m actually looking good (particularly if I’ve made a special effort to) it’s lovely if people notice! Funnily enough I don’t want to look as sick as I feel.
So, here’s my list of things guaranteed to get MY back up, and why. Feel free to add your own in the comments section.
But you’re used to it.

This is usually in reference to the pain I live in, or some other aspect of my ill health. People often say this when they are ill, because clearly having these symptoms temporarily makes them oh so much worse than living with them day in, day out, for years on end.
Can I just clarify something here. You NEVER get used to crippling illness. Resigned to it. Yes. But not used to it. Learning to live with something is very different than becoming used to it. For example, if it became law that all men were to be kicked in the balls on the hour every hour, would their lives remain the same? Would they be happy? Soon this would become the new norm. After initial fighting, and resistance, the men would be resigned to their fate. But, would that make it hurt any less? No. Would it make the daily torture ok? Hell no.

What are you using that for?!

Often accompanied by ‘It makes you look like an old lady.’ Or also ‘You didn’t need it yesterday.’ As you may have guessed, this is referring to one of my mobility aids. Whichever one I happen to be utilising at the time.
Just know that using any of my aids is a huge disappointment to me. I hate to do it. But I will. If it means I can get out on a day Id usually be stuck home, or go on a day trip with my family, I’ll use it. But I’ll also struggle as long as I can without it. There is nothing shameful about using mobility aids, but it’s a personal issue I have, one that I’m trying to get over. I don’t want to feel embarrassed to use something I need. Your ‘joking around’ doesn’t help. Please stop.

It must be nice getting to stay home all day.

I’ve even been called lucky. Lucky. (Just let that sink in.)
I did not choose this life. Staying home all day everyday is not my idea of fun. Being stuck in bed is not my idea of life. I went to university. I used to have a career. I was going to earn good money and have a nice house. I was going to travel the world. There is not a day goes by I do not wish I could be working and less of a burden on my family. Oh, and there’s the crippling pain, exhaustion and plethora of other symptoms. They’re not fun either.

I wish I could be a stay at home mum.

This fits in seamlessly with the above comment.
You know what? So do I! I wish I could be a stay at home mum. At least the mum I always wanted to be. But I’m not. I’m an ill person. I’m a woman who listens to my daughter play whilst I lay in bed. I’m a woman who lets her husband run the home, and needs him to look after her. I’m a woman who’s absolute best will never be anywhere near what she feels she should be doing. Please don’t think I’m getting to be a Betty Crocker mum. I’m not. But I am giving my kids the best of me I possibly can.

You want rubbing out and starting again!

Someone also once kindly told me I needed putting down.
I know these comments are meant in jest. But, when someone is feeling worthless, this type of thing doesn’t help. It’s just another stick for me to beat myself with.

I feel so sorry for you.

There’s many other ways of saying this. But they all boil down to the same thing. Pity.
I don’t want your pity. Sometimes I have my own little pity parties, but they have a guest list of one. My life is what I’ve been handed. I’ll live it as best I can. Knowing I have your pity is not going to help me enjoy it. I’d rather have your friendship. Thanks.

So, that’s a few of my pet peeves. I know there’s many many more. This is a post that may end up having several volumes to it!! But I’d like it to be about more than just me ranting. What is like is for people to read this and for it to make them think. Are you being insensitive without realising it? Could there be better ways of talking to your chronically ill friend? Or even to people around you in general. People all have battles, and past hurts, we aren’t aware of. If I could give one piece of advice, it’s this, if you’re not sure if you’ve caused hurt, just ask. Knowing someone cares always helps.

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