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Disability

December – Life with a Chronic Illness

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Each month I join up with Sheryl from A Chronic Voice for some writing prompts aimed at living life with a chronic illness. This months writing prompts are Travelling, Bonding, Warming, Coping, Ending.

Travelling

I don’t do much travelling around this time of year. My family are all close by, and the only ones who are not come to visit us. This will be on December 14th.

In November, I only left the house three times, and one of those outings was an hospital appointment! The other I was only out for an hour, and the final outing was on the very last day when we went to the local Christmas Tree lights festival. (Anyone who follows me on Social Media will have seen me saying that I’ve only been out twice in November, but that’s brain fog for you, I completely forgot about the other time.)

I will be going out more this month (Fingers crossed) but not really travelling much. I have booked our holiday for next year though. It’s still in the UK but I love a seaside holiday. I have also realised that as my kids get older these families will become a thing of the past. I still remember when my eldest kids became to old to come on holiday with us. I even remember when I got too old to go on holiday with my Mum. I feel sad, but maybe it will give me an opportunity for more travel seeing as it will cost less paying for so many children. Let’s just hope I stay healthy enough.

Bonding

We have had a week of a sickness bug running it’s way through the family and suddenly I have had children again and plenty of bonding. In particular, my Little Man. Instead of wanting to be glued to a laptop or phone or other device, with his headphones on and seemingly in another world, he has spent time talking to me and we even cuddled up together on the settee one day and watched a movie together. I think we all need this special time, either as a family or just two of us. I also got to watch a movie with my husband which rarely happens. He’s generally more interested in watching the sports channel upstairs, sometimes life is too hectic for this kind of bonding.

In past years Christmas was always a time of bonding as my Nan, who was the glue of our family, would bring us all together for the holiday. She left us many years ago now and the family drifted further and further apart. In fact I barely see any of my cousins, aunts, uncles, nieces, nephews and so on. I don’t even see one of my brother’s. So it’s just Graham’s Mum and brothers and my eldest brother and his wife. It seems so distant, those days of a house full of relatives, when the furniture would be moved around to fit them in and the chairs from the kitchen dotted around the living room.

These days the only bonding I get with my extended family is through sending Christmas cards. And sometimes I don’t even manage this.

Warming

open fireplace with a log fire

I suffer so much from cold weather, even at home I find myself covered in blankets and layers of clothes just trying to keep warm and the pain at bay. Sometimes, you just have venture out though and that’s when the warmer clothes come in handy.

In no particular order, the things that make me feel warm in December are;

  • Hot chocolate with cream and marshmallows (And maybe a tot of Baileys)
  • Christmas Carols, I love them and know all the words
  • Believing in Father Christmas, the kids might be getting older but I will always believe in him as it gives me a warm fuzzy feeling.
  • Christmas bells, we are lucky to live near a carrillion which plays the most wonderful Christmas music on a Saturday afternoon.
  • Christmas feel good movies. I can watch them all, no matter how corny.
  • Christmas decorations, trees and lights. I get a warm fuzzy feeling just looking at them.
  • A lovely real fire. We don’t have one, we don’t even have a chimney (But it’s okay, Father Christmas has a magic key) but I can put the You Tube video of a real fire on my TV and put my feet up in front of it. There is no heat but it still makes me feel warm.
  • Christmas food..yummy, everything from chocolate to brussell sprouts. I love Christmas dinner with all the trimmings, and all the treats and deserts that are okay to indulge in over Christmas.

And there is nothing nicer than coming home after a cold outing to a lovely warm house, or cuddling up on the sofa with a blanket, or getting into a lovely warm bed. There are so many ways to feel warm.

Coping

This is a big one for me this month. I stopped my treatment, on advice from my consultant, nearly three months ago. So it’s probably completely out of my system now. It’s been hard and I’ve almost phoned the hospital on many occasions to ask them to give me my treatment (my consultant said I could do this any time.) But, on the other hand, I’ve coped better than I thought I would, and although I’ve gone backwards on many things, I’ve also noticed that some of the side effects are starting to disappear.

That’s one of the problems with a rare chronic illness like Stiff Person Syndrome, no-one really knows what will make it better, and everyone who has it reacts differently to treatments. So coping is the best I can do.

As for the season’s festivities, I cope with them by taking everything slowly. There was a time where I’d be in a tiz if my decorations were not put up on December 1st, but we have a lot on in the following week so I doubt my husband will be able to get the decorations out for me any time soon. We will also have to move furniture, something I can’t do. The Christmas shopping is mostly done online, so that’s how I cope with that. Along with very careful planning.

Ending

The end of the year, such a bittersweet time, especially as you get older. I often wonder if this will be my last year on this earth, will I even make it through another year. I often wonder how I will make through a night so this is not an isolated feeling. Some people say they are glad to see the back of the year, especially when things have not been so good. But I always look back and think of all the positive acheivements I’ve made. The bad times don’t just disappear, but it’s much nicer thinking about the good times, and there is always more than you think.

In past times the period between Christmas Day and the New Year has brought much sadness, grief and pain. It’s a difficult time for us as a family and we realise that all we have is each other, so we try to spend the time quietly, bonding with each other and coping in our own way.

I was admitted to hospital on New Years Day 2016 which is when my chronic illness journey began. So this year it will be four years sick.

Thanks for reading. I’m linking up with Sheryl here and you can click through to see other bloggers interperete the same prompts.

December Link up party

Stiff Person Awareness Day 2019

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Tomorrow is Stiff Person Awareness Day and I thought I’d try and give you some insight on what it’s like living with Stiff Person Syndrome (SPS)

First of all, it seems as though it’s different for everyone. I’ve spoken to, and met, many people with SPS but no-one has exactly the same symptoms.

Diagnosing SPS

Getting diagnosed with SPS is difficult because it’s so rare no-one really knows about it, not even doctors. I was lucky that my consultant had experience of the condition and knew what to look for.

Many people get mis-diagnosed at first, but in fact a few tests can give a positive diagnosis if your doctor has any idea of what he’s dealing with. First up, blood tests. There are certain anti bodies called GAD (Glutamic Acid Decarboxylase Autoantibodies) that attack the immune system. They are common in diabetes type 1 patients, but higher titres are the basis for a diagnosis of SPS. I do not have high GAD anti-bodies.

The next tests are the EMG and NCS. EMG or electromyography tests neuromuscular abnormalities by inserting needles into the muscles and testing them for electrical activity. The NCS or Nerve Conductive Study detects nerve damage and destruction. Positive results from these studies show the damage caused by SPS. They can also come up negative.

Another test, not often performed, is for the Glycine Receptor Anti-body which If present it gives a diagnosis of SPS with PERM (Progressive Encephalomyletis with Rigidity and Mycolonus). Which is what I have.

Other Conditons

Stiff Person Syndrome can be misdiagnosed as Parkinson’s Disease, Multiple Sclerosis, fibromyalgia or a pyschomatic illness. Unless a doctor knows anything about the condition it can take on average 6 years to get a proper diagnosis.

Just to make things more complicated, there are five types of SPS.

  • classic stiff person syndrome
  • focal stiff person syndrome
  • jerking stiff person syndrome
  • PERM
  • Paroneaplastic Stiff person syndrome (cancer)

Stiff Person Syndrome affects twice as many women as men, hence the name being changed from Stiff Man Syndrome.

How SPS Affects Me

I believe I had symptoms for quite a while before my diagnosis but they were not really a big issue. I’d often feel pain when startled but I though that was normal. I’d get pins and needles a lot, but I also thought that was normal. I suffered from migraines for years and often had Trigeminal Neuralgia which can (kind of) be described as a migraine in your face. These are all signs of a neurlogical impairment but I was not aware.

Then I had my first SPS attack. My body went stiff and completely numb one night while in bed. It was very frightening and I couldn’t do anything. I couldn’t even speak or call for help. I did recover however, and I spoke to my GP who believed I’d had a TIA or mini Stroke and requested a brain scan. Before I had that scan I had another attack that was so bad it left me paralysed for days and I was hospitalised.

I still have these attacks quite regularly now, but my medication helps to keep them from lasting too long. I Still suffer from pins and needles and TN and pain from startles. I can walk for only short periods and then the pain becomes too much or I just stiffen and am unable to move. That’s why I use a wheelchair to get around. I am prone to falling, I feel safer walking in my home because I know there is always something to grab a hold of. I would not be able to walk in an open space.

Stiff Person Awareness

If you have been reading my blog for a while then you’ll probably know that most of this I’ve said before. However, as it is Stiff Person Awareness day I feel that I need to use my platform, my soapbox, my blog to let people know about this incredibly rare and pretty awful condition. There was a time when people didn’t know much about cancer but think about how much researach has been done over the years. Think how many lives have been saved because people talked about it and made others more aware of what the symptoms were like.

It will be a while before even Doctors fully understand and know how to treat Stiff Person Syndrome. Many doctors don’t even believe it exists. So it’s important that people like me raise awareness whenever we can. SPS can be fatal, it can also be treated. But it’s also very rare and often unheard of.

If you would like to know more about Stiff Person Syndrome you can visit the UK and Ireland Website for information.

A Zebra...when you hear hoof beats think zebras, not horses. Stiff Person Awareness Day

Previous SPS Posts

and many, many more because I’ve harped on a lot about it for the last 4 years 😉

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BLOGTOBER 2019 POSTS

All You Need is Love, waiting, perservering & affirmation.

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This is my monthly post which I link up with Sheryl’s Chronic Illness link Up Party. This month I’m talking about Waiting, Parting, Perservering, Affirming and Love. This is also doubling up as my first Blogtober 2019 post.

All you need is love, waiting, perservering and affirmation. A cord heart tied on a branch

Waiting

Last month was not a good month. I’m still waiting for test results, but this is the second lot and the first came back clear. If these are clear then once again my symptoms will be put down to Stiff Person Syndrome. When you have a chronic illness, everything that goes wrong seems to be blamed on your current illness.

I’m also waiting for my daughter’s genetic and chromosome test results. I know these take a long time, but when the time I was given arrives I always get anxious. I’m praying so hard they don’t find something serious. Coping with her illness was hard enough when I was well, I can’t bear the thought that she may have worse to come.

Parting

In August a friend I’ve known for about 15 years passed away after a long battle of cancer. She was buried last week. It was a sad parting. I still can’t believe she’s gone. I’m not afraid of death, but grief is so hard to deal with. I hate to think of the suffering of my friends family, especially her husband who is not well himself, and her two children. It’s so sad.

This month is Breast Cancer Awareness Month. I’ll be posting about it on my Social media accounts. This affects so many people, more needs to be done to help. Ironically, yesterday I had my first ever mammogram.

Perservering

Oh my, this has been a tough month health wise. I’ve suffered so much. Some days I feel I can’t go on like this but it’s my family that keeps me going. There is no way I would leave them intentionally so I have to keep perservering with trying to make life better for me and for them. Some days it’s so, so difficult to carry on. I don’t want to feel like this anymore. I want to carry on with my life and do all the things that need doing, but sometimes even the simplest tasks take so much out of me.

What choice do I have? Sometimes it seems hopeless, I keep suffering and I know my family suffer by watching. But I will keep perservering in trying things that will make things better for us all.

“Life is waiting for you. You might be stuck here for a while, but the world isn’t going anywhere. Hang on in there if you can. Life is always worth it.” 

― Matt Haig, Reasons to Stay Alive

Affirmation

I truly believe that the brain is stronger than the body. Mind over matter. Sometimes it’s all I have. So I continue with the self help, keeping my affirmations, telling myself that I can get better and believing it. I take time to live in the moment. I love reminiscing about the past, but it won’t make it come back. Making plans for the future is fun, but you can’t live something that hasn’t happened yet. So, the only thing you can do is live for today. Get through one day at a time, good or bad and look for the things that make me happy.

I love my Little Man and Boo coming home from school and coming to give me a hug. Star is not the hugging type, she’s like huggin an ironing board! I was feeling unwell the other day and she gave me a very rare hug, it meant everything to me. The hugs off my children keep me going, even my big kids hug me. (As a side note, I barely remember hugging my Mum, apart from when she was in hospital, and after she had died. I guess I was an ironing board too, but my kids have taught me otherwise.)

Back to Affirmations, I’ve been reading a lot of Matt Haig lately and he seems to speak to me. I love this quote.

“Make sure, as often as possible, you are doing something you’d be happy to die doing.” 

― Matt Haig, The Humans

Love

As I said, I’ve had a bad month health wise, so reading has been my friend. I’ve loved reading Matt Haig, but I’m also halfway through a very sweet classic book, I Capture the Castle by Dodie Smith. I think I may stear away from some of my usual murder mystery type novels and maybe add a little romance to my reading. After all, they say, all you need is love.

“No one will understand you. It is not, ultimately, that important. What is important is that you understand you.” 

― Matt Haig, The Humans

I’ve never really classed myself as a romantic. I’ve always found the conception of love quite difficult. I mean with family it’s unconditional and that love I find comes naturally. But loving others I find difficult. I think my life needs a little more love.

When my friend passed recently, it was obvious how much she was loved. Am I loved like that? I thought that the way to find love was to please people all the time, or shower them with kindness or help. But, some people just don’t respond in the way you would expect. Love is a strange old thing, and I don’t just mean romance.

“Maybe love is just about finding the person you can be your weird self with.” 

― Matt Haig, Reasons to Stay Alive

Thank you for reading my round up this week, by clicking the picture below you can visit Sheryl’s link up and see how other’s have interpreted these prompts.

October link up party

Read last months writing prompts here, The meaning of Life, the Universe and Chronic Illness.

blogtober 2019 around a pumpkin on a dark wood background.

Blogtober Posts

Blogtober Linky

See Other bloggers Blogtober posts.

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The Kuga, Our New Car

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Ford Kuga

our new car, a Ford Kuga

Meet our new car, a Ford Kuga. I think it’s pretty nice. It’s not exactly what we wanted and I can’t drive it because it is not adapted. But it’s still nice to have a new car.

Motability Scheme

We get our cars on the Motability Scheme.

The Motability Scheme enables anyone in receipt of a higher rate mobility allowance (such as the Enhanced Rate of the Mobility Component of Personal Independence Payment or the Higher Rate Mobility Component of Disability Living Allowance) to use their mobility allowance to lease a car, scooter, powered wheelchair or Wheelchair Accessible Vehicle. The Scheme provides flexible and hassle-free access to a brand new, reliable vehicle of your choice – giving you greater freedom, everyday.

The cars are not free, you give up your benefit, or part of it, to pay a monthly lease fee. The car does not belong to you at any time and can be taken away if your benefit stops. After three years you have to give the car back, but if you are still entitled you can choose a replacement and start again.

Benefits of the Motability Scheme

When you think about it, it’s a pretty expensive way of getting a new car. You can buy a new car for the same weekly price (or less) and the car will belong to you. But the Motability scheme comes with many benefits such as:

  • Insurance for up to 3 named drivers
  • Break Down Recovery
  • Services and MOTs
  • Adaptations that would cost a fortune to have fitted yourself

When you add it all up it is worth it. Even when both myself and Graham were in full time work. (Before I got sick) we couldn’t afford a new car. My cars (As I was the only driver then) were usually second hand and pretty old. We’d end up having to fork out loads of money for MOTs and repairs. And I had to pay seperately for Break Down Recovery. I had built up a 10 year no claims bonus on my insurance, but even that was an extra expense.

Why Do We Need A Car?

When I first got sick in 2016 we already had a motability car for Star. She’d had surgery on her spine and was too ill to go to school for 11 months. The criteria changed for being accepted for a car and we no longer qualified for Star. She’d recovered from her spinal surgery, but the condition that caused it was still present. However, because she could walk more than 20 metres the car was taken away.

At the time we didn’t mind. I was the only driver and I had been unable to drive for two months anyway, so the car was just sitting there. We would have been sending it back as soon as we’d got around to it, but I was still hopeful of recovery at the time.

Then I was loaned a wheelchair from a friend and I started being able to go out again. We soon learned how difficult it was getting on buses with a wheelchair, especially ones full of pushchairs and prams. Travelling was a nightmare. We even went on holiday by train, the holiday had already been booked and paid for before I got sick, so we didn’t want to waste it. The journey involved two trains, all our luggage and three young children. It wasn’t enjoyable.

It got to the stage where I didn’t want to leave the house, going anywhere at all was a pain. Long times in my wheelchair where causing even more pain. After six months I also realised that I was not going to recover.

My First Adapted Car

When we qualified again for a Motability car I went to see about getting on with hand controls so I could drive again. We had a Skoda Yeti which had a push and pull hand control with a little indicator on the top, so I could do everything with one hand. This left only one hand to steer, so I was provided with a knob to put on the steering wheel which made it much easier to turn.

It took a while to learn how to drive it, and we had some freedom back for a while. At the same time Graham was learning to drive as well.

Giving up Driving

I drove the yeti for a few months but when Graham got his licence I handed the wheel over to him. I barely drove again, not only did I never really get used to hand controls, I found it painful to drive. And although I was given the go ahead to drive on my medication, the letter states that I should do so only if I felt I was able. Which was not very often.

When it was time to replace the Yeti we decided not to have adaptations on the Kuga and I gave up driving. This made me feel much sadder than I expected and kind of took the shine off receiving our new car. It didn’t help that the new car is manual when the Yeti was automatic. Graham was so used to driving automatic it took him a couple of weeks to get the hang of it.

Getting used to the Kuga and not driving

I’m feeling a little more happier about it now. I didn’t learn to drive until I was 30, up to that point my ex husband had done all the driving and I was quite happy just being a passenger. When I was single again I decided that it would be nice to drive myself and passed my test after just a few months of lessons. It seemed I was a natural. I loved driving and I’ve clocked up many, many miles over the years I was behind the wheel. Giving up was hard, but I know it’s the best choice really. Ironically, the last time I drove the Yeti was to give my ex husband a lift earlier this year.

Now I’m back to being a passenger, and Graham is getting used to driving the Kuga. It really is a lovely car and so comfy. Mabye I’ll drive again one day, but for the next three years I’m just going to be chauffered.

More Information.

If you would like to know more about the Motability scheme you can visit their website. You can also visit The Big Event which is held at the NEC every year. Another exhibition at the NEC for lots of information on disability (including cars and Wheelchair Accessible Vehicles) you can visit Naidex for free.

The Meaning of Life, the Universe and Chronic Illness

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It’s time for my monthly writing prompts from the lovely Sheryl at A Chronic Voice. This week I’m looking at the meaning of life.

Finding

I laughed when reading this prompt. It seems like I’m forever searching for stuff lately. I can’t remember where I’ve put anything and it drives me and my family nuts. I’m not the only one though, the rest of my family are just as useless at finding things so I don’t think this is down to my illness but probably an inherited trait.

But on a deeper level I’ve been looking for the meaning of life and wondering why some people have it so much more difficult than others. Is it true that there is a form of re-incarnation, where karma plays a part? If that’s the case then I must have been something real evil in a previous life and now I have to pay for it. The more I look into my life as a whole the more I find that things have been pretty crap since I was a very young child. Not just health wise.

However, I do appreciate every day the good things that have happened in my life, even if they went from good to bad, at least they were good for a while and that’s what I have to focus on.

It’s not Just Me!

Then I hear of other’s stories and realise that so many people have such crap lives and it is actually a very few that have blessed time while here on earth. (And even those I know who outwardly seem to have blessed lives are still hiding some dark times.)

So in conclusion, I’ve found that life is pretty crap!
But, we are only here for a short time, and for some, it’s far too short. So, as a positive minded person, I have to make the most of the time that I’m here and try and make it better for those around me too. At least then I will feel that life really does have some meaning.

Life has no meaning. Each of us has meaning and we bring it to life. It is a waste to be asking the question when you are the answer.

Researching

I’m constantly researching the effects of my illness, I think it’s one of the natural things you do when you have a chronic condition. I am keeping a log of things and have some ideas for my consultant next time we meet. I don’t think my current treatment is working so well, and I’ve always asked for more. Well, this month I went to my GP and asked for less! Yes, I requested a reduction in my medication. Sometimes the side effects are worse than the benefits and it’s so difficult to work out.

Earlier this year I was having heart problems, I had severe palpitations which at times made me think like I was dying. But it turns out that a change in my medication was all that it took to lessen them. I’m not completely cured but it’s gone from happening almost every day to once or twice a month. It was only through researching my medication that I worked this out. The Doctors were too busy looking for reasons within my body for these symptoms, attaching me to machines and recording my heart patterns. I researched the reactions of my medication and which worked best for me.

We humans are amazing creatures, every one of us is so different in body and mind. Sometimes Doctors, even though they are brilliant, work too methodically to realise this and often miss the real meaning behind what’s happening

Dating

I wasn’t going to answer this as I’m a married women. Dating is not something I do. I don’t even have ‘date nights’ with my husband. But, if I’m honest, dating is not something I’ve done much of all my life.
I met my previous husband at the age of 16 and he was my first serious boyfriend. When we split up, I dated a total of two guys before meeting my current husband. I’m no expert on dating.

But, when I did meet my current husband I decided that I was never going to get married again. He was never happy about that but we spent many years together. Then when I got sick (my illness happened quite suddenly) he stuck by me and wanted to do all he could to help me. I hear so often in the chronic illness society about relationships just not lasting because the partner couldn’t manage with their loved one’s illnesses. But Graham was prepared to stick around no matter what. So I married him and we are just coming up to our third anniversary, despite being together for eighteen years.

If he did leave me, then I don’t think I’d even bother trying to date again. I know it’s never the end of the line and that there are plenty of older guys out there that would probably make suitable partners. But honestly, sometimes looking after yourself makes it way too difficult to factor someone else in, so I’d probably just stay alone.

Reusing

I’m taking this as a prompt to write about recycling or changing from throw away products to protect our earth. I hate it when people who are trying to be more ‘green’ get labelled as ‘snowflakes.’ Our planet is our most precious resource, of course we need to protect it.

Sidenote: I hate the term ‘snowflake’ as being used as a derogatory word anyway. One of the most beautiful things in life are snowflakes and each one is individual, just like us humans. So, in fact, every one of us is a snowflake anyway. And trust me, any one of us can melt away in an instant too.

I have recycled for many years but I’ve stepped up the mark lately by cutting down hugely on resuable plastics. We’ve gone back to using bars of soap instead of plastic bottles and flannels and cloths rather than throw away wipes. I went one step further this week when my son complained that his duvet was not keeping him warm. Instead of throwing it out and buying another. I found an older duvet and put both inside his cover, all it needed was a quick wash and freshen up and now he has a big thick duvet ready for the colder months.

I could go on and on about reusing and saving our planet. But that would be a whole blog post on it’s own.

Recounting

I’ve already touched on recounting the good memories and weighing them up. I may have had a lot of bad things in my life, but there have been good times to remember. I had a lot of memories come up recently while clearing out my old wardrobe and going through old photographs and memory boxes I’d created.

One thing I was thinking about recently was how quickly things change. I remembered all the times when we were going through difficult times and now they are just distant memories. Recounting past experiences can be therapeutic.

I remember when my daughter was young and I knew I had diary that I’d written while my eldest daughter was the same age. I decided to read through it and suddenly realised that it had been one of the worst years that I’d ever experienced (up until that point anyway!) But, I’d gone there because I’d wanted to recount the good things about my baby girl and it saddened me that these good times had been overshadowed by the bad…but only in my writing..in my head it was still good. The brain is an amazing tool.

Finding Meaning.

So, in life, no matter how awful, we have to focus on the good. One good day a month maybe the only thing I can acheive these days, but it doesn’t matter. Even on the worst days I can do something worthwhile. I love creating things and I’ve found crochet extremely therapeutic. I love reading and absorbing stories, I get excited and engrossed, and even though it’s not my life, it’s something I can ‘live’ even for a little while.

I’ve also discovered the power of Netflix. I haven’t been such a television addict for many years. But now there is nothing I like more than waiting for the kids to go to sleep and then switching on a program or series that I can truly lose myself in. It’s not wasting your life, it’s enhancing it. Giving you those little thrills, whether it’s enjoying something else’s romantic encounters, being on the edge of your seat with the thrills, or even feeling scared. When you can’t get out there yourself and experience these emotions it’s good to find them in other ways.

Twin Mummy and Daddy