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Raisie Bay

Stiff Person Syndrome

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

My Sunday Photo – Selfie and About Me

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A Selfie with me and Boo taken this summer.

I don’t do a selfie 🙂

A selfie with me and my daughter Boo

About Me

I’ve had some new readers lately, probably because of Blogtober, so I thought I’d do a little piece about me.

The photo above is a selfie taken of me in my wheelchair with Boo posing behind me. (I always think it’s good to add something pretty to a photo of me.) I’m really not normally a selfie person so you won’t see many.

Boo is my 12 year old daughter, she’s one of five. I have a 31 yr old son and a 30 yr old daughter from a previous marriage. Their Dad left us when they were quite young, and by the time they were Boo’s age he was living in another country.

The other three share the same Dad as Boo. Star is 14 years old and has a few medical issues. The youngest is my Little Man who is 9 years old. (As you may have gathered I don’t use their real names.)

I started this blog in 2011 as a follow on from my baby blog (Baby Number 5) which I started when the Little Man was born.

Now, most people could write a book about their life, well I could write about four. So I will try and condense a few things.

Quick Facts

I have five kids, as I’ve already said and they go, Boy, girl, girl, girl, Boy. Both my boys were born by C-section, the girls were all natural births. Apart from my first born they were all born either on their due dates or slightly before. Apart from my first born they were all born in the summer. Their hair colour is ombre, the eldest’s hair is so dark it’s almost black, then they go lighter in colour as they get younger down to my youngest who is blonde (but getting a little darker as he gets older.)

I got married young and had my first two young. I started work at 16 and only had maternity leave until my second was born then I went back to work when she was three years old. I worked full time until they were almost teens and I also worked part time for my degree which I received when I was thirty. I landed a fabulous job at Birmingham University which I had to give up for personal reasons . Since then all work I have done has been done from home.

Why am I in a wheelchair?

I was fine for most of my life, then suddenly, on New Years Day 2016 I was taken to hospital after becoming paralysed. I’d woken up with pins and needles which wouldn’t go away and ended up spending two weeks in hospital. They gave me intravenous steroids and several medicataions and taught me how to walk again. It was so hard, I learnt a new respect for toddlers, getting your brain to move your feet and hold up your body is an amazing thing that we take for granted.

I also learned how to pull myself up steps and get up and down from sitting. They also had to prove I could make a cup of tea and piece of toast before allowing me to go home.

I had every test under the sun including an MRI and a lumbar puncture. Eventually the only thing they found was that my body had attacked itself and damaged my spinal cord. It was termed auto-immune and I was diagnosed with Transverse Myelitis. I was told I would be better within eight weeks. It seemed like a lifetime.

Diagnosis number two

A year later and few more tests involving long needles and electric shocks as well as bloods and I was diagnosed with Stiff Person Syndrome with Progressive Enchephamyelitis with Rigidity and Myclonus. (PERM for short.) The condition is so rare that it affects less than one in a million people world wide. There is no cure and they are still working on treatments.

The prognosis is an average of three years of life (I’m currently approaching four) but the statistics have not been updated for years and were based on subjects who had other conditions including cancer. I do not have cancer.

Last Words

I’m not sure if you’ve got this far, like I said, this is just a snippet of my story. When I started this blog I was healthy and enjoying a life of fun and activity with my three ‘littlies’ as I called them. Now, my life is so different and my chidlren are growing up so quick. Sometimes I wonder where life has gone.

I also feel robbed. Because of my condition, I can’t continue with a ‘normal’ life. There is so much I want to do that I can’t and my independance has been ripped away, literally overnight.

However, no matter how low I get (And I’m pretty low at the moment) I know that I’ve done well in my life despite it’s ups and downs. I’m happy that I had my children and they really are my life. I’m not dissapointed that I haven’t travelled the world or found fame and fortune. The most treasure you can ever have is what you hold in your heart. My children are my fortune.

And Boo, is a lovely addition to any selfie, even if I do say so myself 🙂

My Sunday Snapshot bad from Rachel Swirl
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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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I Told You I was Ill

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a photograph of an old church with stones in the cemetery

‘I told you I was ill’ is the famous epitath of Spike Milligan who died at the age of 83 in February 2002.

Listening to some women talk in the hospital yesterday brought it home to me how this epitath could be the serious comment of so many under healthcare at the moment.

It’s not unusual for me to hear tales of people, all over the world, who have been ill for many years before getting a diagnosis or treatment. So many get told that the tests are not showing anything and begin to believe their symptoms are all in their head.

Hypochondriasis or hypochondria is a condition in which a person is excessively and unduly worried about having a serious illness.

But I really Am Ill.

I always considered that my diagnosis came quite quickly. I went into hospital with severe pins and needles and eventually paralysis. Then I had a full MRI and was sent home with a diagnosis of Transverse Myelitis. A condition where your own body attacks the spinal cord. I was told I would recover in six to eight weeks. Eight months later when I hadn’t recovered more tests were done and my diagnosis was changed to Stiff Person Syndrome with PERM. I had the results from the tests in the post in October 2016 and they were negative. But when I saw my consultant the following January he said that other anti-bodies had been found, glycine receptor anti-bodies. And so my diagnosis was given.

But was My Diagnosis Really that Quick?

I am not an hypochondriac and the only time I ever really complained about anything medical was during my pregnancies. I was always terrified for my babies, not for me. It was worse with my older pregnancies, especially after my miscarriage. I imagined everything that could go wrong would go wrong. I ‘did’ over react sometimes.

However, with hindsight, I know that I was showing symptoms of my condition at least five years before my diagnosis. Pins and needles that took forever to ease off, weekness in muscles, pain, cramps etc. The first time I visited the GP I had a pain in my side which kept re-occuring. I had ultrasound scans but nothing was found. I even went to A&E once the pain was so bad, but they gave me a shot of morphine which made me feel better (And happier/higher!) and sent me home. The pain came back as soon as the morphine wore off, but I’d felt humiliated at the hospital, like the pain wasn’t taken seriously.

Then Things Got Worse

One night, 3 months before my hospitalisation. I had my first SPS attack. At the time I had no idea what was happening. While I was in bed and my body was paralysed all down the left side. I couldn’t move or speak. There was no way I could call to my family for help. I was alone and terrified, not knowing what was going on. I went to the GP and told her what had happened and she scolded me for not calling an ambulance. But how could I, I couldn’t even call my son in the next bedroom.

My GP had believed that I’d had a T.I.A or mini stroke and requested a CT scan at the hospital. I never had that scan, the next time I was in hospital was when I had my major attack and I had a full MRI instead. (or my 100 minutes of hell as I refer to it.) I do not have any issues with my brain.

My medication prevents me from having such severe attacks now, but if I’m honest, I’ve felt just as bad as I did that day I was admitted. There’s no point in seeking help though because it’s just my condition and I have to deal with it.

Why Does it Take so Long?

There are many reasons why it takes so long for someone to get a diagnosis for something not common or apparant. There are tests for things like meningitis, sepsis, cancer and many other common conditions. But, they are only carried out if really necessary, for cost and health reasons. If your condition is rare you might never be offered any tests at all.

A hospital will have to be quite certain that it is necessary for you to have an xray, CT scan or MRI before carrying one out, and sometimes these are the only ways they can see what’s wrong.

Most of the people on the day ward where I go have Multiple Sclerosis. You would think that this is quite a common condition and that it would be diagnosed quite easily. The truth is that symptoms can creep up slowly and not give the doctors enough reason to carry out the necessary tests to find out it is MS and sufferers can have the condition for many years before finding out.

What If You Are Ill?

Bascially, if your heartbeat is okay, your blood pressure within the limits and your temperature is fine then you are not ill. That’s what I have learnt. It’s the basic SATS and they do them first, if you pass the tests you are okay and wait for someone to see if there is anything else wrong. And waiting can mean waiting for a very long time.

I’ve heard so many patients talk about being made to feel like hyperchondriacs or even that their ailments are all psychosomatic. (In their heads!) It’s disheartening to hear of how people have suffered because no doctor has taken them seriously.

A&E departments are too busy and the Doctors there are rushed. Every one of my experiences there has been quite negative. I was admitted once, and almost admitted a second time with pneumonia. The choice I was given was that I could have had the anti-biotics adminsitered by IV or take the pills home. I decided to go home. The other times I’ve been dismissed without help because it’s my SPS causing the problem and they can’t do anything for me.

I see a cardiologist regularly, but he can’t find anything actually wrong with my heart. It’s just my SPS causing it to spasm. One day it may cause it to stop, but there is nothing they can do until then. I don’t have a ‘normal’ heart condition.

I see my neurologist who asks how I’m doing and I say ‘crap.’ And he says ‘ok, see you next time.’

The Future

The future is bleak. They have promised to pump more money into the NHS but it won’t help unless they get a lot more doctors and do a lot more research. We are so lucky to have such a brilliant resource, and despite my complaining, I have nothing but respect for anyone who works for the NHS. But, it’s stretched and needs so much more to make it work.

My Father-in-law was sent home with a really bad chest because they decided he needed a CT scan rather than an Xray which the GP had sent him for. They couldn’t arrange the CT scan the same day so they sent him home. And he died.

People slip through the nets all the time. You have to be really sick to be taken seriously. There are so many people who feel ill, that are sent away from hospital, and don’t go back because they feel like they have wasted time. Me included. Maybe if I’d pressed on about feeling ill for all those years then I’d still be walking somehow now? Maybe I could have had the treatment before my spine was damaged?

It’s too late for me, but I wanted to write this because if there is someone out there reading who feels that they are not being taken seriously. Please keep trying. I hope someone will listen to you. Even if it’s ‘all in your head’ you can get help, you deserve help. Help is there, but sometimes you have to fight for it.

blue background with a pink flower and the words, to the one soul reading this, I know you're tired, I know you're fed up, you're so close to breaking. But there's strength within you even when you feel weak. Keep fighting