chronic illness

Life With a Chronic Illness

February 20, 2019 by Anne Sweet 6 Comments

I’m linking up to A Chronic Voice Link up Party for people with Chronic Illnesses, and following the prompts for February.

Adjusting

I already have a post in my drafts about this which I’ll probably never publish. Adjusting can be so difficult sometimes and, hands up, I’ve been having problems.

It’s the simple things, filling the dishwasher, carrying the washing, cooking dinner, cleaning, all the usual things that most mothers or housewives do naturally.

I want to do them. I want to be able to de-clutter, tidy the bedrooms, change the bedclothes, sort the old clothes.

I can’t. It’s just not physically possible for me. So, I’ve had to adjust. It’s no good asking others for help, they don’t do it quickly enough, or at all. I can say, ‘please bring the washing down from the bathroom’ every day for a week, but it’s still there. So I bring it down myself. I drag the basket down the stairs, step-by-step. I’m scared of it tipping up and knocking me down the stairs, so I go as slowly as possible and hope for the best.

Then I get berated for doing it.

I’m adjusting, slowly. I don’t like it, but if I do a little at a time I can get through. I just have to accept that there are some things that I cannot do.

Hoping

I hope a lot. I hope that I will be offered a new treatment. I hope that my current treatments will actually work. I hope for a day free of pain. I hope for a cure. I hope that one day I’ll wake up and this will all be gone.

But these are not what I’m really hoping for. I am realistic, I know my fate.

My biggest hope is that my children remember me as a fun, kind, friendly, happy Mum and not as a disabled Mum.

Surviving

There are times when I am really ill that I’m not sure I’m going to survive. Because of this I’m grateful for every day that I do.

I’m surviving this condition, I’m fighting it all the way. I think of the future and half of me does not want to carry one for another 10 or 20 years in pain. The other half wants to survive, because ill or not, life has so much to offer.

Befriending

Another blogger talked about befriending her condition. I think that’s kind of what I’ve been trying to do. That post that will never get published, it was all about acceptance.

I feel I need to accept my condition and let it become part of me instead of letting take over me. You can’t get rid of it, but you can accept it. That’s kind of befriending it isn’t it?

Awakening

When you have lots of time to think, all sorts of things awaken inside you. What have I done with my life? What else can I do? How will my illness prevent me from doing all the things I want to do? Is my life over already?

These are the dark thoughts awakening and it’s hard to shake them off. I get them frequently but I try not to let them take over.

To prevent the black dog from awakening I practice mindfullness, meditation and just taking plenty of time out to do what I want to do. Then I’m able to regain my perspective. My life isn’t over, it is worth living. There is always hope and I know I’m so lucky to have such a wonderful family around me.

Footnote

For any new visitors to my blog, my illness is Stiff Person Syndrome which is a rare neurological disorder. I also have PERM

photo of a zebra with just it's head and shoulders showing — Medical Zebra/Rare condition

What it is like Living with a Chronic Illness

January 16, 2019 by Anne Sweet 20 Comments

I can’t speak for everyone because we are all different. But living with a chronic illness is often misunderstood.

Imagine that the next time you get one of those horrid colds that knock you off your feet, disturb your sleep and make you feel like crap for a few days.

Then you get better and go back to normal, glad that it’s over, you survived intact.

Now imagine you don’t get better and it just carries on like that for weeks on end. Or maybe it gets better for a while but you know it will be back again in a week or two. That’s what living with a chronic illness is like.

The Spoon Theory

A lot of people refer to the Spoon theory. When you are not well you can imagine a day where you wake up with a number of spoons. Then after every activity you take away a spoon until there are none left. Sometimes they can last all day and you may even have an extra one for the next day. But you can also have days where the spoons get spent very quickly and you are left unable to do anything else for the rest of the day. You can even overdo things one day, leaving you with fewer spoons for the next day.

A lot of chronically ill people refer to themselves as spoonies, I am a spoonie.

My Story

Three years ago I was taken ill quite suddenly. I don’t know what caused it but I’ve learnt since that shocks can trigger your body into attacking itself. And I’d had a shock when my Father-in-Law had suddenly dropped dead in front of me with a heart attack,while I was taking him for a hospital appointment.

Two days later I was back in the same hospital myself, virtually paralysed. Totally numb. I was originally diagnosed with Transverse Myelitis and told I would recover within a couple of months. A year later I was diagnosed with Stiff Person Syndrome plus PERM and told that recovery was unlikely.

Things I have Learned Since I Have Had a Chronic Illness

Life with a chronic illness is hard, harder than you can imagine.

Life is also difficult for loved ones, they have to watch you suffer and see someone they depended on become someone they have to look after instead.

It’s difficult to carry on with a normal lifestyle, even if you are well enough to continue working you will need to take lots of time off sick.

It’s hard being a Mum, especially when your child needs you and you can’t be there for them.

You’re mental health deteriorates, you may start out feeling positive that you can beat the illness, but as time goes by you feel like it’s just not worth living any more.

People don’t like to be around sick people.

You find that people just don’t understand how you can be ill so often.

People stop asking how you are.

You stop being invited to events because people just assume you won’t be well enough to go.

It’s difficult to plan for anything because you don’t know if you will be well enough.

A lot of partners cannot cope with life with a chronically ill person and decide to leave them.

Staying Positive

It’s amazing what a difference having a positive attitude can have. I am not always positive, but when I pull myself out of my self-pity and hold my head up I feel so much better.

Life is not always easy, not for anyone whether you have a chronic illness or not. But, it’s up to you how you approach life, how you deal with it, that makes things better. I may not find any relief from my pain, but it certainly makes me feel better when I can laugh and have fun with friends and family.

I’ve just had an awful weekend, I’m not sure if it was side effects from my infusions, or related to something else but I really was ill. I could barely do anything but watch television. My family just left me to it. But there is only so much I can take, I will push myself to do things, not give in to the pain, probably even make myself feel worse in the end. But, in my mind I want to be the winner, not the giver upper!

There has to be a balance though. Sometimes when you are rock bottom it’s okay to admit it and give in, so long as you are willing to fight for it when you are ready. I gave in, I watched 3 hours of Friends and 4 hours of Doctor Who over the weekend. I’d had enough by then, enough lying around and giving in. But I’d also allowed myself to wallow and rest. It was time to fight.

One day I know the fight will be gone, but until then I’m going to polish my spoons and keep on keeping on.

courage is not having the strength to go on, i'ts going on when you don't have the strength

10 Facts About My Condition

October 20, 2018 by Anne Sweet 4 Comments

I have Stiff Person Syndrome, I am one in a million

Today’s Blogtober prompt is 10 Fact About Yourself. I’m turning this around a little and using it as a little awareness for my condition. In just five days times it will be our Awareness Day for Stiff Person Syndrome so this is quite timely.

I have this stupid Stiff Person Syndrome which is a condition which does exactly what it says, it turns it’s victims stiff. But it’s an extremely rare condition, believed to be one in a million sufferers world wide, and each person has different symptoms and reacts to different treatments. No doctor really knows what to do. And whenever I end up in hospital and say I have Stiff Person Syndrome I just get blank looks like I’m making it up.

Let’s get on with some facts about Stiff Person Syndrome….

Stiff-Person syndrome is characterised by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms.
People with Stiff-Person syndrome can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls.
Stiff Person Syndrome is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia
There are some rare forms of Stiff Person Syndrome that are due to Paraneoplastic Syndrome. The person has a cancer and might not know it yet. The immune system Ramps up to fight the cancer and goes haywire attacking other organ. In SPS case it’s the central nervous system: brain and spinal cord.
Most, but not all, of patients with Stiff Person Syndrome have elevated GAD65 levels in the blood indicates that the body is creating an antibody that attacks GAD, impairing the body’s ability to make GABA.
Some people with Stiff person syndrome have the glycine receptor anti-body which is generally an indication of the PERM type of the condition.
Stiff Person Syndrome can cause swallowing problems to the point of medical crisis. The patient then develops severe anticipatory anxiety about swallowing and starts to avoid eating.
Other disorders that can cause symptoms similar to Stiff Person Syndrome include hyperekplexia, multiple sclerosis, transverse myelitis, occult vascular malformations, neuromyotonia (Isaac’s syndrome), Schwartz-Jampel syndrome, muscular dystrophies, and metabolic myopathies.
Stiff Person Syndrome was originally named Moersch-Woltman Syndrome after the doctors that discovered it.
There are 5 types of Stiff Person Syndrome:

-classic stiff person syndrome
-focal stiff person syndrome
-jerking stiff person syndrome
-progressive encephalomyelitis with rigidity and myoclonus (PERM)
-paraneoplastic-related stiff person syndrome

Stiff Person Syndrome and Me

I first fell ill on 1st January 2016, but I realise now that I’d been showing symptoms for about a year previously. When I did get ill I was admitted to hospital unable to move. Intravenous steroids over a 5 day course got things working again and then I had physio to help me learn to walk before returning home 13 days later.

I was originally diagnosed with Transverse Myelitis after an MRI and lumbar puncture had ruled out MS. A year later, further testing of my muscles, nerves and blood showed that although I was GAD negative (see 5 above) I did have the Glycine Receptor anti body and was diagnosed with Stiff Person Syndrome plus PERM (6)

Next week I’ll be promoting the new Stiff Person Syndrome UK website and Youtube channel. I’ve been preparing lots of things to share on our Twitter account and I’ve made a video from clips of sufferers all over the world. The more people that know about our condition the easier it will be for future diagnosis and treatments to be made, so awareness is extremely important.

Thank you for reading, and if you ever want to know more about Stiff Person Syndrome then please ask.

A zebra with text "The zebra stripe ribbon for stiff person syndrome refers to training in medical school where they teach future doctors that "when you hear hoofbeats, think of horses not zebras!" — Please watch out for my zebra pictures on Twitter next week

Don’t Look Forward, Look Back!

January 29, 2018 by Anne Sweet 15 Comments

Don’t look forward, look back. Now, that is not my normal advice. For every step of life you shouldn’t dwell on the past but on the future. Keep on striving for what you want, there is always room for improvement and you have to make the best of your time on this planet.

In my own case, why should I look back on the past where I could walk and do so many things I can no longer do. I should look forward, think of how I can heal, think of how I can be better again.

But in this case I’m looking back, simply as a time scale. You see, at the moment I feel like I’m stuck in a 70 year old body, the pain, the immobility, the inability to live a normal life. I’m not 70 though, I have 18 years to go until I am 70. But 18 years doesn’t sound a lot does it, it will pass in a flash and if I even make it that long I’m going to be feeling 70 for a very long time. I look at friends and peers and think that they don’t look so aged as me, they are still enjoying life to the full, still working, still having fabulous holidays, still doing all the things they did before and even more because their kids are all grown up (or growing up quickly.)

So, I’m looking back.
Let me see, 18 years ago I was a single parent of two youngish children. I was working full time and juggling everything a single mum does. I was trying to date, whenever I could get a babysitter that was. Then my world exploded, exactly 18 years ago, and I almost lost everything including my sanity. I did lose my job and almost lost my home, I certainly lost my family apart from my two children and one of my brothers. It was a very low time for me indeed.

Then over the next two years I began to build things up again, I met my current husband, we started enjoying life again. I went on to have three more wonderful children and we moved from a very crowded small house to the lovely big house we have now. We built up to a stable and happy family life. Yes, we had our ups and downs but doesn’t everyone? 18 years ago I was rock bottom, but now it seems like a lifetime ago.

It only took me two years to get out of that awful place I was in 18 years ago. If I can improve my health and my life in the next two years then I will have plenty of time to carry on enjoying my life before I become a 70 year old in a 70 year old’s body. In fact, there are many of 70 year old’s and even older having a good life.

I’m going to fight this, I’m going to fight for a better life.
I know what I have to do and I’m going for it.
I’m not waiting for my miracle to happen, I’m going to make it happen.

I’m looking back because 18 years ago life was shit and I made it so much better.
I’m looking forward because I can feel 70 in 18 years, I’m not going to give in to feeling it now.

Keep on Hoping, Keep on Wishing but Most of all Keep on Believing

September 10, 2017 by Anne Sweet 13 Comments

Last week I went to A&E because I really thought there was something wrong with my heart. It felt like someone was sitting on my chest, crushing me and making it hard for me to breathe. I called my GP but I was told to go straight to A&E. I was given a red card on entry which meant I was seen straight away. They put me on a ECG monitor and checked me over. Then I was to wait to see a Doctor. As I was waiting over two hours I figured that they’d worked out that I was not having a heart attack.

I saw the Doctor and after lots of questions and further examination, and a consult with someone higher up the decision was that my pain was due to my condition, Stiff Person Syndrome. There was nothing they could do for me and I had to see my consultant for treatment. They couldn’t contact my consultant so that’s up to me, but I have an appointment in two weeks so I’m not sure they will see me any sooner.

For now I just have to deal with it an accept that this pain is yet another one I am going to have to get used to.

I also have been getting pain in my arms and hands, getting dressed has been really awkward. Again, I’ve been told it’s due to my SPS which is progressing. I was affected from my waist down, now it’s from my neck down. No, from my head down because I also get triginemal neuralgia which is another symptom of SPS and affects my face.

My first reaction to the news was to panic. I sobbed. I don’t want it to progress so soon, I knew it would eventually but it’s not even been two years yet. A lot of people with my condition (which is not a lot really because it’s so rare) have died within three years. The positive side to this news (for me anyway) was that they were not diagnosed in time and did not receive the right treatment. I’m extremely lucky to have been diagnosed so quick, and there are treatments available, so I’m still hopeful. What I am worried about it my consultants lack of concern, he didn’t even follow up to see how my last treatment (in June) went. I’m going to have to be firm with him when I see him next. I can no longer wait six months between appointments, if he’s too busy to fit me in then I will see someone else.

So after my self pity, (I really don’t want to lose my hands and arms, if my legs don’t want to get better I’ll deal with that but I can’t lose my upper limbs, I just can’t) I’ve decided that I’m going to bring out my fighting spirit. I’ve researched all the treatments that might work and I want to try them until I find one that does work. Of course, I would have to get the rarest form of an extremely rare condition, which means my consultant will have fight for the treatments, but I’m determined not to give in.

I also need to be pro-active. I have let my diet slip again and I do get lazy. Activity causes me pain, but if it’s the only way to keep my body doing what I want it to do then I need to be more active. I will walk more, I’m thinking of getting some of those comfortable crutches that support the arm so they don’t feel all the stress of holding me up. I have a friend who is great with alternative medication and although she’s been having a rough time this year with her own issues, I think she’s ready to start advising me again now. I am also in contact with other sufferers which helps a lot.

Sometimes I think that, you, my readers, get fed up of me harping on about my condition. But, this is my place and sometimes I just need to share. It makes me feel better, writing things down can be so cathartic and sharing my story may help someone else in the future. I know that reading another sufferers story as helped me, she’s into her 16th year and it’s been really rough for her, but now she has found the right treatment that works for her and is enjoying life again.

Just a couple of weeks ago my wish would have been to walk again. Now, that’s just a dream, a bonus. My wish now is that I can stop this condition from continuing it’s progression.

One thing is for sure, I won’t give up. I haven’t tried half the treatments that are available yet, and as much as I despise the thought of being on medication for the rest of my life, if it gives me more life then I will take it. I have children who need me. My husband needs me. And I don’t want them to be my carers I want to be the best I can and the only way to do that is to fight this illness and not let it get the better of me. It won’t win, I will!