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Raisie Bay

Stiff Person Syndrome

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.

“3

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

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

At Least You Don’t Have Cancer

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photo of a hospital drip holder with medication bag possibly cancer treatment

I’ve had a few people say to me “at least you don’t have cancer” including my husband.

I’m so glad I don’t have cancer, it’s an evil disease that doesn’t care who it attacks, young or old. Nearly everyone knows someone with cancer. Getting a diagnosis feels like being given a death sentence. Even those that survive never really recover.

The treatment for cancer is brutal with many side effects. Sometimes it works, sometimes it doesn’t. It attacks different parts of the bodies so all cancers are different.

Cancer has taken far too many people too soon, destroying families. Survivors live with the knowledge that it can strike again at any time. Survivors also often suffer with Post Traumatic Stress Syndrome.

Cancer took my Mum, two of my sister-in-laws and my nephew. Cancer wrecked the first few years of my friend’s little boy’s life. I have friends with cancer. I hate cancer, I really do.

I’m glad I don’t have cancer.

At Least You Don’t Have Stiff Person Syndrome Plus PERM

I’ve never said to anyone ‘at least you don’t have Stiff Person Syndrome plus PERM.’ Probably because the answer would be like ‘huh?’

When you say cancer, everybody knows what you mean. They know that it’s awful and it can kill, and often does. They know how dreadful the treatments are. Most people know someone with cancer, it’s so common.

Stiff Person Syndrome plus PERM (SPS+) is incredibly rare. Less than one million people in the entire world have it. It can take around seven years to diagnose and most Doctors have never heard of it. It can also be a sign of cancer.

SPS+is so rare no-one knows how to treat it, not even the specialists. Drugs have been used and some found useful. Most drugs are not prescribed because the condition is so rare they are not registered for it.

The drugs I take for my SPS+ are classified so my partner has to go to a regular chemist to pick them up where they know him. If he has to go somewhere else he needs to show identification.

My drugs have many side effects that can make me extremely tired, sick and dizzy. They can also affect my heart and memory.

photo of my hand with a cannula inserted.

I go to hospital for treatment every month. Not in stages, but every month for two years now and probably for as long as I’m alive. I don’t get tests to see if it’s worked because it can’t cure me, just help me from getting worse, and maybe make life a little easier for me. The treatment can cause headaches, flushing, fever, chills, fatigue, nausea, diarrhea, blood pressure changes and tachycardia. It can also cause acute renal failure and thromboembolic events as well as aseptic meningitis. (which I’ve already had.)

I have pain all the time, I can’t walk without aid, and then only for very short periods. I get vertigo and have absence seizures. Most of the time I just want to sleep. I have spasms that can affect any part of my body and that can be so severe they break bones. (So far, just ribs for me.) The spasms can also affect internal organs, including my heart and lungs. Each severe spasm feels like I’m dying.

There is no cure, there is no proven treatment. Most people have never heard of it. I’m in pain constantly, I could die at any time and my medication has just as many side affects as the ailments it’s supposed to be treating.

Yes, I’m lucky I don’t have cancer.

And, you are so lucky you don’t have SPS+

Mix It Up Linky

I’m no Superwoman

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Superwoman in Shenyang China, hanging from a building

Photo by Harry cao on Unsplash

It’s been three years and three months. I look back, no, I am forced to look back by bloody Facebook, on the things I said three years ago.

It’s okay, it’s not bad, I can do this, I’m not going to let this beat me.

I can’t do this anymore.

I’ve said that so many times. It’s bloody hard waking up in pain day, after day, after day. It’s even harder trying to fall asleep in pain, night, after night, after night.

The pain is constant, it never leaves, it’s part of me now, something I just have to deal with.

Does that make me special, am I superwoman because I can cope with pain every day and still make a joke, say something positive, or even smile?

Hilarious

I laugh sometimes, especially at the Impractical Jokers (Comedy Central.) Yes, Sal, Murray, Quin and Joe have me in stitches, even though it’s not the kind of humour I usually enjoy. Sometimes it’s nice to have a little stupidity in your life. I’m going to see them in October, Live! I’m so excited.

It’s also a depressing tale. My daughter bought the tickets while I was really ill a while ago. She came up to my room and told me. I spent the rest of the evening (night, day, I don’t know, I was ill,) worrying about it. She’d booked front row tickets for us, spent a fortune.

I can’t sit in the front row, I’m disabled. I have to sit in one of the special places for wheelchairs. My daughter was annoyed, she insisted that I’d be able to walk in and sit at the front. I walk around the house after all. Even if I could I wouldn’t be safe in an emergency, I would be breaking violations. I’m not allowed to sit there.

It was then I realised that no-one, not even my family members understand.

I can’t do this Anymore

I am in pain, constantly. Every step I take hurts so bad I’m longing to be done with taking steps. I get up to put my phone on charge on the other side of the living room. Yes, I can do it, but no-one understands the effort and pain.

I can help my husband cook a meal in the kitchen, I have a stool, I have counters to lean on. Taking something to the sink or getting something out of the fridge is a lot of effort. At the end of cooking I can’t wait to sit down. I don’t enjoy my meal because I’m hurting.

This happens in front of my family on a daily basis, but they still don’t understand how I feel, how much it hurts.

I can walk from the living room to the kitchen and visa versa. I don’t want to do it twice though. I get up to answer the door when someone knocks. I’m exhausted by the time I get there, from the pain and the effort. I still do these things because if I don’t I’m giving up.

I could give up, boy, I so want to sometimes. I just don’t want to do this thing anymore, this life, this existence, any of it.

I want My Life Back

I want the old me back, I want to be able to run around after my kids, pop to the shops when I feel like it, walk up the garden, or around the park, drive a car, visit people who have doorsteps.

I want to go to the dentist and the GP on my own. I don’t want to go to the hospital any more.

I want to be able to visit my Mother’s grave, tend to it, clean away the dead flowers and polish up the headstone.

I want to be a Mother again, take my kids to school, go to parents evening, take them out, play with them.

I’m no Superwoman

I hate this, I hate the me I am. I’m no superwoman just because I post something positive on Facebook, or here on my blog.

I have always been a positive person and that’s not going to change. Because despite everything, if I don’t stay positive then what is there?

When I say I don’t want to do this anymore, it makes people angry. I have no right to give up, I have family, I have a home, I have a lot more than a lot of people. Hey, I might even have a future if I’m lucky.

And Cats, Cats are nice

So, I swallow up the bile, live with the pain, and just do it. I get up out of bed (sometimes I really don’t want to, the pain is so bad, but even though I’ve begged for help it’s not happened, so I just get on with it.)

And that’s it, that’s my life.

I’m no Superwoman, I’ve got no choice.

I don’t want sympathy, I don’t want to know how amazing I am, I don’t want people to know what I’m really thinking.

I didn’t chose this to happen, I’ve done everything I can to heal myself but nothing has worked.

And I don’t know if I can do it.

Oh no I’ve said too much,

I haven’t said enough

R.E.M Losing My Religion

I won’t give up, I can’t give up. I know what it’s like to lose a parent, it’s hard at any age and my youngest is only eight (the age I was when my Dad died.) I have to keep fighting. I have no choice. But wouldn’t it be so nice to be allowed to sleep ……

And Dream of Sleep

Little light shining
Little light will guide them to me 
My face is all lit up
My face is all lit up
If they find me racing white horses 
They’ll not take me for a buoy

Let me be weak, let me sleep and dream of sheep


Oh I’ll wake up to any sound of engines
Every gull a seeking craft
I can’t keep my eyes open 
Wish I had my radio 
I’d tune into some friendly voices Talking ’bout stupid things
I can’t be left to my imagination


Let me be weak, let me sleep and dream of sheep 
Ooh, their breath is warm
And they smell like sleep
And they say they take me home 
Like poppies, heavy with seed 
They take me deeper and deeper

Songwriter: Kate Bush

“Reflections