chronic illness

Writing Prompts for April

April 6, 2019 by Anne Sweet 9 Comments

Each month Cheryl from A Chronic Voice sets out a list of writing prompts for those that suffer with a chronic illness. The prompts this month are;

Tiring
Educating
Receiving
Giving
Quieting

Tiring

I made a vow that I needed to get out of the house more, at least once a week. I made this vow after spending 14 days without leaving the house at all. However, I think I may have overdone things by going out several times a week and tiring myself out.

When you live with a chronic illness it’s hard to strike a balance. If I stay home all the time then I just feel tired constantly. If I go out I feel tired, but in a different way. I do get so sick and tired of looking at these four walls though. Maybe I can get a balance when it’s warm enough to sit in the garden, that’s going out without going out!

Educating

This is quite a relevant prompt for me this week, there has been a lot of educating going on.

I did a course in poetry, it’s something I’ve always loved writing but I’ve never really spent time learning the basics. I enjoyed the course, which was online, but in a group of people so it was good to get and give feedback.

I’ve also been educating myself about the drug Rituximab. I’m going to see my consultant next week and I’ve wondering whether to ask about it. So I did some research first. I’m still not sure it would help but a few others with my condition have had good results so I’ll see what my consultant says.

Another thing I’ve been learning about is Bi-lateral Alternating Stimulation Tactile (BLAST.) I won a pair of Touchpoints from a competition I entered at Naidex and was keen to find out how they work. I’ll definitely be writing more about them as they do have an affect on calming stress amongst other things.

Receiving

There has been much receiving going on too. As I’ve already said, I won some Touchpoints from Naidex. It’s the first time I’ve won a competition from an exhibition, despite entering them all the time.

I’ve also received a new cooker as my old one kept cutting out. My eldest son paid for it but I’ll be giving him some money back towards the cost. I haven’t really felt inspired to cook more though.

I also received some news this week. My youngest son is believed to be on the Autistic Spectrum. It wasn’t really a surprise, but it’s always like taking a huge leap from thinking it to knowing it. He’s still my gorgeous Little Man though.

Giving

I’ve been busy with my crochet and I gifted my Nephew’s daughter a baby blanket for her new baby due in a few weeks. I also sent along a rabbit that I’d made for her other daughter.

a soft toy bunny in grey with a purple scarf and pink nose — Hop the bunny

I’m also in the process of making a baby blanket for my other Nephew’s daughter, she is due in June and is having a little boy.

I can’t believe that both my brother’s are great grandparents already. I know they are older than me, but I’m not even a grandparent yet, never mind a great grandparent!

Quieting

I’ve been so busy it’s taking it’s toll as even though I’m just a week after my IVIG treatment, I’m feeling totally worn out. I need to take some time out and rest.

My favourite ways of spending quiet time is by crocheting and listening to an audio book. I also like to get engrossed in a good tv program.

I love it when I’m left alone in peace and quiet, I’m quite happy with my own company. It doesn’t happen too often though. I need to fit in all the peace and quiet I can in the next week as it will soon be time for the kids to break up from school.

Linking up with the lovely Cheryl from A Chronic Voice for this months writing prompts

a list of this months writing prompts — writing prompts

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

Keeping Well

May 15, 2018 by Anne Sweet 3 Comments

It’s not been the best of time for me health wise, after catching the kid’s sickness bug I seem to have been knocked off my feet, almost literally!

It’s made me think a lot about my illness and how it’s progressing. I don’t like it, and I don’t like my family seeing me like it either.

This is not my usual state of mind. I probably get on a lot of people’s nerves but I’m really a ‘cup half full’ type of person. It’s strange really when my life hasn’t really strolled along the easy path, it’s definitely been a slow mountain climb with lots of crumbling rocks on the way.

Maybe that’s why I’m a positive thinking person. If I focus on the negative then I’d probably be a very depressed person right now. That doesn’t mean that I’ve never suffered depression, I have quite a few times, but these days I am well aware of the warning signs and I know the best ways to keep it at bay.

So, what have I been up to this week?

Well, I’ve got a new hobby! I have always been interested in papercraft but I’ve never been the arty type. I’ve decided that I’ll give it a go though and I’m making some cards. I’m using my favourite resource, Pinterest, to get some inspiration and I’ve been buying some bits and pieces to get me started. Okay, I know you don’t absolutely need a die cutter for starters, but I couldn’t resist treating myself to one.

Here’s my first attempt.

I’ve even ordered myself a cabinet to keep my bits and pieces in. With this and my crochet I’m going to be keeping very busy.

Talking about crochet, here is my latest creation.

The request for these keep coming so I can see myself making more. I’m also working on a big blanket with a CAL (crochet along) but that’s a year long project. I am loving it already though and can’t wait for the finished product. I can’t decide whether I prefer big projects or little ones. Last night I spent about an hour crocheting this jammy dodger tape measure cover.

I think now you may be able to see how I cope with my illness…I occupy my brain and my hands 🙂

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