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
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
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.
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.)
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.
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
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:
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.
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.
As 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
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
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
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.
Hi my name is Roz, and I’m a 32 year old married mother of 3 girls, and also a coloured pencil artist.
Roz’s Wolf Sketch
I’ve always had a love of arts and crafts. From a young age I would doodle and draw, paint, make things and generally make a mess. As I got older I decided that I wanted to study art, and took an extra GCSE in art, so I studied both 3D and 2D art. I loved the variety of materials that I was able to use, from pencils to paints, and clay to fabric. I got the grades that I needed to study art at A Level and that was when my love of drawing really started. I decided to concentrate on graphite, and that was what I have worked in until recently. I would spend a couple of months drawing from magazines, or photos of animals, improving my techniques as I went along, and then put it all away when life got in the way. When I had a bit of spare time, I would get it out again and improve my techniques a bit more, but never worked on it consistently over the years.
I was also quite active when I was younger and would walk for miles every day, swim, bike ride and generally keep quite fit and healthy. But that all changed when I became pregnant with my eldest daughter.
From early on in the pregnancy I knew that something wasn’t quite right. I knew that I would get aches and pains, but the pain I was getting was a lot worse than I expected, and it continued to get worse from week to week. I was having trouble walking and had unbelievable pain in my pelvis and hips. I mentioned it to my consultant, who told me that it was normal stretching pain and I was making a big deal out of nothing. I was refused physio and told to get on with it, so I went to see a physio privately, who diagnosed me with SPD (Symphysis Pubis Dysfunction, or PGP as its now called).
It continued to get worse throughout the rest of the pregnancy, and it caused complications for the birth (which I don’t need to get into) I also dislocated my coccyx (which is still dislocated 12 years later).
The same thing happened during the second pregnancy, but it was a lot worse and came on a lot quicker. Unfortunately I had the same consultant again, who told me that same thing ‘Its just stretching pain, stop fussing’ only this time it was so bad I couldn’t walk, had to be helped to do everything by my husband and was in such an awful state that I spent a lot of time crying and wishing it was over. This time my physio gave me the news that I had had a Spontaneous Symphisiotomy (where the pelvis basically splits in two) I was given crutches and a support belt and told to rest. I was referred by my physio to a women’s health physio at the hospital who specialised in pelvic problems in pregnant women. She couldn’t believe the state I was in. Again it made for a difficult and painful delivery.
Roz’s Grapes on a vine
Unfortunately whilst my pelvis was in two parts it twisted in opposite directions, and when it did fuse back together my hips were out of line, it effected my spine, my coccyx and my Sacroilliac and Symphysis Pubis joints.
The third time was better. I was under a different consultant, a woman this time, who had read my notes, knew the condition and got the ball rolling to get me all the help that I needed. I was given physio all the way through, was put on bed rest, was given a support support belt and the physio was there during the delivery to make sure that my pelvis wasn’t flexed any more that was safe to do so.
I was also referred to an orthopedic consultant who I am still under today. I have been diagnosed with Diastasis of the Symphysis Pubis, Scaroiliitis, Dislocated Coccyx, a Prolapsed Disc in my lower spine, my hips are 2″ out of line and I have severe and constant Sciatica. I am under a gastroenterologist who has diagnosed me with IBS too, and have intolerance to wheat, lactose, soya and caffeine.
I am in constant pain to this day with my pelvis and lower back, I have to use crutches most of the time, and have a wheelchair. I have also had to have the house kitted out with home aids to help make my life easier. I am allergic to painkillers so can’t take anything for relief. It gets really hard to cope with it all some days and I do get very down, but I have fight for my girls. I was trying to take my mind off my pain by card making, sewing, and crocheting, but have had to stop all of those due to the pain, lack of mobility and energy and my more recent diagnosis of Fibromyalgia and Raynaud’sDisease.
Roz’s Leopard Sketch
I noticed a couple of years ago that I was feeling pain more widely through my body, I was also feeling exhausted all the time, couldn’t concentrate on anything for any amount of time, and generally felt unwell. I was also extremely susceptible to the cold too, and got blisters on my hands and feet.
It got to the stage that I couldn’t do any of the crafts that I loved to do. I had hit rock bottom and couldn’t see a way out. I had nothing in my life other than extreme pain. I had to stop driving, which I loved, stop all of my crafts, I couldn’t go out, couldn’t manage around the house by myself, and had to rely on my husband for just about everything. Even my girls had become carers for me, fetching and carrying things for me as I struggled around the house on my crutches. I couldn’t do anything with them as the pain was so severe even the smallest movement brought tears to my eyes. I was on the brink of a breakdown and couldn’t see a way of getting out of it. I knew I had to do something, but didn’t know what I could do when I had so little going in my life.
I went to my doctor and explained how I was feeling, and he immediately diagnosed me with Fibromyalgia and Raynaud’s Disease. He told me that it had been caused by the trauma that I had been through with my pelvic problems and referred me to a Rheumatologist. My Rheumatologist is great. As soon as he saw me during my initial appointment he officially diagnosed me and we started on a medication plan. Its taken a lot of work and a lot of tweaking my medications to find some that I’m not allergic too, but I’m now on two different medications that do seem to be helping my symptoms. I’m also getting regular steroid injections which help too.
Custom pet portrait
Don’t get me wrong. I am still in a lot of pain on a daily basis, and there are still days that I cant get out of bed, but they don’t come as often now.
I’ve also started up my love of drawing again. I decided that seeing as there are so many things that I can’t do, I need to find something I can do, and I have all the materials that I need right here in the house to start drawing again. I have also branched out into coloured pencil work in the last 11 months, and am having a fantastic time using them. I do have bad days when I don’t feel up to drawing, but it takes my mind off how I’m feeling and I brightens my spirit when I do feel up to it. I have had to adapt how I sit to draw, and have to have a lot of breaks, as sitting in one position causes a lot of pain, but I work in stages, and don’t mind if a drawing takes me weeks to complete.
If it hadn’t of been for the support that I have received from my amazing husband and children over the last 12 years I don’t know how I would have coped. They have been there, and continue to be there for me, day in and day out and I am so grateful for that.
Roz’s Chipmunk
I will have to deal with my conditions for the rest of my life and my pelvis and hip problems will get worse in years to come, but for now I am enjoying being able to draw again, and getting a bit of my life back.
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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This website uses cookies to improve your experience while you navigate through the website. Out of these cookies, the cookies that are categorized as necessary are stored on your browser as they are as essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may have an effect on your browsing experience.
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