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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!

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Caring is a full time job

Being a carer for your partner

I have never written a blog before and I am not all that good at writing about who I am or how I feel. Just lately I have felt that I should give it a go and reach out to people. Caring can be a lonely job. I get sick of people telling me it’s not a REAL job and that I should go to work and stop claiming tax payers money.

I care for my husband who was first diagnosed with Epilepsy 10 years ago. This is how it all started. He had to give up work because his fits got a lot worse. He was a hazard in the work place. It was worsened by the fact that he had an accident and broke his neck. He’s lucky to be alive. I love him so much that I am thankful he is still in the land of the living. His neck is crumbled and the gravel as we call it pushes on nerve endings which caused his fits to get worse.

While going through the system and trying to work out what was the cause, he was diagnosed with Schizophrenia. I have always taken his mood swings as a quirk and neither of us knew he had a mental disability. It opened our eyes to how much can be hidden under the surface.

Giving up work for him caused a great depression. He’s never been the same. With the system treating us the way it has it has caused anxiety and panic attacks so now talking to strangers and going to new places is a challenge for us.

Life can never be the same. So YES, I am just a carer but I don’t get time off. I don’t get holiday pay. I don’t get any support from anywhere and I am left to rely on my own decision making to what is best for us. I don’t have time to be sick. I am needed every minute of the day. I wish I could go to work and work nine to five. I would surly make more money and possibly have a more comfortable life.

I didn’t choose for this to happen. I’m not just sat here on my backside doing nothing all day like people seem to think I am. It’s hard work. Maybe not physically every day but mentally every second. Every time he has a seizure he could die. If you love someone just take a moment to think how that feels. He has at least two a day on a bad month. There is nothing I can do but sit by his side and pray he pulls through.

So no, I don’t have a title, a posh house or children. I gave up all my dreams to be by his side everyday. Love is the foundation of my life. My gift is the days I get to see him smile without pain.

I craft to keep my sanity. I love to create. I love to see people smile and I think LOVE is the most cherished gift we can share with one another. It’s FREE and it changes lives.

So next time someone says they are a carer, take a moment to realise they give up their lives for others happiness. Give them some supportive encouragement. I know we all sure could use it.

Thank you for taking the time to read this. Much love to you all. xx

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Jaymee’s Battle

Borderline Personality Disorder

Our story begins when Jaymee became a mother, at the age of twenty. Soon after she was diagnosed with Postnatal Depression, a fairly common problem that many mothers face. As is so often the case, Jaymee was given antidepressants and sent on her way. But Jaymee knew deep down something wasn’t right. Months passed, and she didn’t improve. Those months turned into years and still Jaymee was no better. During this time the doctors tried many different tablets, but none of them worked. The only thing Jaymee gained from the medication was a detachment from her feelings, a numbness to life. This feeling (or lack of it) enveloped her, it became her new normal. Her coping mechanism to get through the endless days of feeling broken inside.

Around 2013 Jaymee got to the point where she lost herself completely, she had a complete mental breakdown. The medication she had been on had only delayed the inevitable. She describes herself as “high as a kite one minute, the next (she) was the lowest (she’d) ever been”. Jaymee was thrill seeking, and taking crazy risks, with no consideration for those around her. Yes, she admits she had fun at first, but there comes a point when the fun stops and all you’re left with is emptiness and regret. It’s not fun anymore when you’re constantly hurting those who love you. You’d think that being a mother would help put things into perspective, but alas it didn’t. She couldn’t see beyond her own selfish desires. Looking back it was a very dark time in her life, though at the time she didn’t realise.

Jaymee says, “This is a place I don’t want to go back to. It was awful. I hurt and blamed the ones who loved me, pushed away people who cared.”

Along the way Jaymee was unkind to herself as well as her family and friends. She had completely lost herself, to the point she wasn’t even Jaymee anymore. It felt as though her head just wouldn’t work how she needed it to. She was lost, adrift in a sea of confusion and extreme emotion. Eventually she snapped. Everything came crashing down and Jaymee could cope no longer. Desperate for help she did something “really stupid and regrettable”, and though she wishes it had never come to that, she did finally get the attention of her doctors. After years of them just telling her it’s depression, here’s a tablet; they finally took noticed and realised there may be something more going on.

Jaymee was referred to a Psychological unit. Finally she had been guided onto a path, instead of wandering aimlessly lost through life. She remembers how the first thing they considered was Bipolar Disorder, but it wasn’t that. She remembers how it took a whole year of doctors, psychologists and psychiatrists analysing her to finally get an answer. A year of being watched, evaluated, pried into. A year of waiting, stressing and wondering. It was not easy to go through, but it was worth it. Because eventually Jaymee got her diagnosis. Her label.

Jaymee has Borderline Personality Disorder. The symptoms of this are wide ranging and can easily be mistaken for other things, such as depression. But BPD is completely different, and as such will not respond well to the tablets Jaymee had previously tried. Mind describes Personality Disorders as being a type of mental health problem where your attitudes, beliefs and behaviours cause you longstanding problems in your life.

Being diagnosed didn’t make all Jaymees problems go away, but it did help her to understand herself a lot better, to start being kinder to herself. Her diagnosis meant she was able to explain to the people she loved why she behaves in the way she does. It helped her learn to accept herself again, and take some control back. She was finally put on medication that had been properly tailored to her needs. Medication that actually helped. But even more importantly she was given a team of people to support her, and guide her through learning to live with her new label. She had counselling and went on courses to help her manage her emotions.

The journey was just starting, and it was to be a long and difficult one. Getting a diagnosis, a label on your back, does not automatically make things easy. There were many bumps in the road, and Jaymee almost gave up on herself so many times. But she didn’t, she caught hard and she’s still here today, stronger than ever before.

Last year Jaymees life took another turn, tragedy struck and she lost her Father. The man she had worshipped and adored all her life. Such a cataclysmic event is enough for anyone to fall off their path in life, let alone someone with mental illness. But instead Jaymee did the opposite, she grasped her life in both hands and took back control entirely. Starting by coming off her medication. Now, Jaymee admits this was probably a rash decision, and it’s certainly not something she would recommend to others, but she knew it was something she needed to do. Jaymee needed to grieve for her father, to work through her pain and her loss, she knew this wouldn’t be possible for her on medication designed to dampen down extremes of emotion. Her doctors disapproved, but in the end it was her choice, not theirs. But she didn’t turn her back on all the things she had learned since her diagnosis. Jaymee took those skills and used them to get through life, facing one day at a time.

A year on and Jaymee hasn’t touched her medication again, and she’s feeling better than she has done in a long time. Finally she feels as though she’s found a part of herself again. Things are not easy, she still struggles from time to time, a diagnosis of BPD doesn’t just go away if you choose to stop taking your medication. But Jaymee is learning to live with it, with pride and a new sense of self worth. This has been one of the hardest battles she is ever likely to face, and she’s done it! Eight years, eight years was how long it took to get a diagnosis. Jaymee will never get those years of her life back, those years that should have been spent enjoying motherhood but instead were full of battles. Battles with herself, doctors, and those she loved. She knew in her heart all those years ago that Postnatal Depression didn’t fit with the way she was feeling. Jaymee knew the doctors weren’t doing all they could for her, and she often wonders how her life would have turned out if she had just shouted a little louder, pushed a little harder.

If you are struggling with mental or emotional problems Jaymee has this message. “Please , please, don’t suffer in silence, seek help if you need it and keep going until you’re listened to. Mental Illness is not a weakness, from mine I found my strength”

Jaymee bravely decided to share her story on Facebook recently. Had she not many of her friends, myself included, would never have known of the struggles she’s faced. Mental Illness is perhaps one of the truest forms of invisible illness their is. So easily hidden, and so often seen as taboo, people can be left helplessly floundering, battling their demons alone, for years on end. Jaymee says that if even one person can be helped by reading her story, then it was worth it to share. To Jaymee, I say thank you. Thank you for letting us in, and for trying to help those in need. I too hope your story helps others, I believe it will.

If you are struggling with Mental Illness advice can be found at Mind.org. This post was adapted from Jaymee’s original Facebook post.

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

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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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Broken Promises 

sick of being sick

Sometimes I actively hate my body. Today is one of those times.
Yet again it has let me down. It has not lived up to its end of the bargain. It has promised me something and delivered only disappointment and pain.
It probably seems odd to you that I speak of my body in this way. Like an entity I do battle with. But that’s how it is for me. My body is my enemy. My monster in the night. My prison cell. My torture device.
I must be kind to my body. I must treat it with respect and not push beyond my limitations. I must rest when I need to and eat well, take my medications and generally do what I can to appease the beast. But what’s the point?
What’s the point when I do everything right, but still my body betrays me????
I do everything right yet I still end up with tears down my face.
The point is that I have to try. Maybe tomorrow will be better. Maybe tomorrow I’ll be joking about it all again.

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