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stiff person syndrome

Monthly Chronic Illness Writing Prompts. Why I stay!

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Each month I like to join in with Sheryl’s writing prompts. She gives the prompts and then I have to write about each of them and how they apply to my life. This month I’m really thinking about why I stay.

The prompts this month are

  1. STAYING
  2. DOING
  3. BEING
  4. TARGETING
  5. WEIGHING

Staying – Why I Stay

So much of the time, especially in the recent months, I’m thinking why I stay. Yes, I mean why I stay alive, why I stay here on this planet, why I stay here in this house, this home. A lot of the time I don’t want to stay, I want to be anywhere but here.

My family drive me nuts, my illness drives me nuts, my daily routine drives me nuts. My work, my words, my life, waking up in the morning, going to bed at night, it all drives me insane. I so often don’t want to do it anymore.

But then I think again. We only have one shot at this life and so far I’ve been through a lot. But that’s my life and that’s the one I was given. Yes, I could have been given a life of luxury with a nice house, plenty of money and lots of holidays. I could have been given a life in war torn Syria. But I wasn’t, I was given this rather ordinary life in England. Which got messed up along the way, but it’s still my life.

And I still have things I can be proud of. Especially my children. And that’s why I stay.

Doing

What will I be doing this month? Well, we are currently in the process of having our family bathroom turned into a wet room. That means an accessible shower for me. So, although I won’t be doing the work myself, I’m coping with the workmen every day disrupting my daytime routine. (You know, the one I’m sick of!)

Then I’ll be helping my husband re-arrange our bedroom in preparation for my lift. He’ll be doing all the hard work, but I really need a huge purge, so I’ll be telling him what has to go. (including two bookshelves full of books.)

Being

I guess I’m being me. My usual moany but unable to ask for help self me. My hope is that I can be different. I feel as though I have learned so much recently. I have done a lot of studying and reading and learning, but the last couple of years I’ve become so much more aware of people. I’m not so sure I like people very much which is strange seeing as I have a degree in psychology. You would think I understood how people behaved, but trust me, it’s takes more than a psychology degree to understand people. So, I’ve decided that I have to start really being who I am and forgetting about what other people think of me. So watch out for me being different. Although, I may just appear to be the same. Some things I refuse to change.

Targeting

What am I targeting this month? Well, I guess it has to be my health. I’ve been reading through my consultant’s letters and something clicked in how my health has changed over the past few years.

There are two things I need to target. My mental health, which I’m already working on with a counsellor, but I also need to work on more pain management. I thought I was pretty good at mindfulness and mind over matter, but it turns out that, yet again, I have much to learn. I will be focusing on this a lot over the next month (And forever.)

The other thing is my weight, or more specifically, my diet. I have learnt that specific things trigger me, too much, or too little sugar can have an adverse affect on my health. Also, my stomach suffers after eating certain foods so I really need to avoid or find alternatives for bread, milk, some fruits and coffee. There are probably a few more things I need to add to list, but it’s not so simple as following a specific diet, this has to be ‘my’ diet. I do need to lose weight too. Before I got sick I used to fret about being 7 lb overweight, now I’m more like 28 lb overweight and it’s hard to shift being so immobile. I barely eat anything as it is so it’s going to be hard to shift, but I’m sure it will make me feel better.

Most of the weight I put on after having high doses of steroids. Not everyone is the same, but after the first dose of IV steroids I put on a few extra pounds. Then a year later I was given a second dose of IV steroids followed by six months worth of them titering them down each week so I didn’t stop suddenly. This dose caused me to put on most of my weight and also destroyed three of my teeth. (My dentist said that steroids do not affect teeth, but after talking to others I found out its quite common.)

a plate of healthy food

Weighing

I’ve just confessed about my weight gain and how I need to change it, so now I’ll talk about something else.

I’ve been weighing up my life in general and working out the things that have the biggest effect on my health. As I’ve already stated I’ve identified these as mental, food and weight.

Overall, my current quality of life isn’t good but after weighing everything up I am coming up with plans for improvement. My home will be improved to help my ability to cope, my mental health is having a real good spring clean, and my physical health will hopefully improve too.

For four years I’ve been looking for a cure, and came to the conclusion that there wasn’t one. But after weighing it all up, maybe I was wrong. Maybe I can get better, or at least improve a little.

I started this post by talking about how I have been so close to ending it all, but as you can, my positivity has won over and I am already working on how to make life better. I lost faith in myself and in humanity, but my cup never fully emptied and I know I can fill it up again.

Thanks for reading and if you’d like to see how other’s have interpreted these writing prompts then please click the image below.

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My Writing Prompts for February

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

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

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

Show Your Rare – Make Them Listen

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Today is Rare Disease Day. I’ve written lots on my rare condition and also Star’s condition, but today I wanted to write about getting help when you are rare.

Star

Way back in 2013, Star woke up one day with a wonky neck. I took her to the GP who said to take her to A&E. We were told she had torticollis and that it would get better itself. It didn’t and we were back in A&E three more times before they scanned her and discovered a rotary subluxation of a disc in her neck. She was admitted.

A week later she was sent home again after having nothing but pain relief and muscle relaxants. She was given physio therapy but the therapist stopped treating her as she was sure she was getting worse not better.

I’ll cut a long story short, over the next eighteen months I had to fight to get the treatment my daughter needed to fix her neck. Each step was slow and, for her, painful. It seemed that none of her doctors where listening to me. She was finally diagnosed with a rare condition called Elhers Danlos Syndrome.

Her condition means that her ligaments are lax and she is prone to subluxations. Her bones can slip out of place and back again, causing a lasting pain. She has also dislocated her ankle a couple of times and dislocated her wrist. It was also, most likely, the cause of the subluxation in her neck. Which is why none of the treatments worked until she was permanently fixed with plates and screws.

She has many more issues and even now, with a diagnosis, we still have to keep on at doctors until they listen. Her condition is rare and it makes it more difficult for doctors to treat her with traditional methods.

Me

I had problems for a few years before I was really sick, but no doctor could work out what was wrong with me. My mental health was questioned on more than one occasion.

Then I became so sick I was paralysed and admitted to hospital. Again, no doctor really knew what was wrong with me. I was in a teaching hospital and each day students came in to question and examine me. They were clueless too. I did get a diagnosis of Transverse Myelitis, but I knew that my doctor was not absolutely sure of that.

A year later, I had learned to walk again (in a fashion..I know how to put one foot in front of the other, but balance and gait are something I’ve never mastered.) After more tests I was given the diagnosis of Stiff Person Syndrome. Again, a diagnosis does not mean that treatment is available, or that doctors understand my condition.

Each time I go to hospital it’s always the same, they don’t know how to treat me. So long as my blood pressure, temperature and heart rate are okay, they send me home and tell me it’s just part of my condition. I tend to not bother going to hospital now if I feel really ill, what’s the point?

Make Them Listen

Days like Rare Disease Day, and Charities like RareDisease.org help raise awareness. Without this then future generations will also go on not knowing anything about these rare diseases.

Why?

Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

Rare Disease Day


Disease or Condition?

  • A disease is a pathophysiological response to internal or external factors.
  • A disorder is a disruption to regular bodily structure and function.
  • A syndrome is a collection of signs and symptoms associated with a specific health-related cause.
  • A condition is an abnormal state of health that interferes with normal or regular feelings of wellbeing.

As you can see from the chart above, even though you can give a different description to disease, disorder, syndrome and condition you can also see that they are all similar. Each one causes the patients body to react in a way that a normal healthy person doesn’t.

Both my daughter and I have syndromes, but we also have an abnormal state of health (condition,) a disruption to regular bodily structure and function (disorder) and our symptoms where caused by a response to internal or external factors (disease.)

Never Give Up

If I leave you with one thing it has to be never give up. There are so many rare diseases out there and the doctors really don’t know about all of them. There is a saying amongst the medical profession,

If you hear hoofbeats look for horses not zebras

This means that doctors are looking for the obvious not the rare.

This is why many people with a rare disease/condition/syndrome/disorder call themselves medical zebras.

Awareness is needed so that the Doctors will recognise those zebras!

zebra

10 Facts about Stiff Person Syndrome

Rare Disease Day 2018

The Day My Diagnosis Changed (Stiff Person Syndrome)

When it’s Not All Black and White (Elhers Danlos Syndrome)

My Angel (Star’s first Halo)

An Update on Star (Star’s Surgery)