Disability

Writing Prompts for August

August 5, 2019 by Anne Sweet 5 Comments

Prompts for the Month – Capturing, Financing, Controlling, Exchanges, Motivating

Capturing

Ever since I can remember I have been capturing memories. I have boxes and boxes of photos and photo albums from the days before digital photos were a thing. My many digital photos I wouldn’t dare to count, it would take me forever.

I have also been capturing memories with diaries. Hidden in my wardrobe I have a selection of handwritten diaries starting from around 1982! The most regular years are from when my older children were little, 1988 to about 2000. I stopped writing things down then because life got too tough and the memories from the next couple of years are imprinted on my brain and I don’t need reminding of them.

By the the time my younger children were born then online journalling was a thing. I started my first blog in 2003. In more recent years I’ve been capturing so much of our life right here on Raisie Bay. It’s full of all our lovely memories, and some of the not so lovely ones.

This post about Stars 7th Birthday Party has been one of my popular posts of all time.

And here’s a captured memory of my Little Man in a Fire Engine in 2014

A little blonde haired boy looking out of the window of a fire engine

Financing

Being in the UK, I am lucky to have the help of the wonderful NHS. However, it’s sad to see that it’s struggling so much. If I decided to go private then the cost would be well beyond my means, and my lovely NHS consultant could refuse to treat me once my money ran out.

Why would I want to go private? Well, I don’t complain about the NHS because I know I owe them so much, but my treatment has not always been good. I’ve even had to go to the complaints department because of the way my daughter has been treated. But my treatments cost a lot and the NHS funds them.

There are other treatments I could have that would cost a lot more. There have been mixed results from these treatments, but I guess I’ll never find out if they would work for me. My consultant is trying to get funding for one of them, but he is very doubtful it will be approved.

Another treatment is HSTC a form of stem cell treatment. I could fight for the treatment on the NHS but so far I only know of two people with my condition in the whole of the UK who have had it on the NHS. One worked, the other didn’t. I could go private, there are groups which encourage you to fundraise and got to Russia or Mexico for treatment. I really can’t see myself doing that. I’d never be able to raise the money needed, I’d not want to leave my family for the months it takes, and I wouldn’t be entitled to help from the NHS if it all went horribly wrong.

So, although unlike many other’s with my condition in other contries. I’m lucky that I get treatment for free. But Finances also play a big part in my treatment.

Controlling

When it comes to my illness I like to think that I’m controlling it rather than it’s controlling me. It’s the cup half full approach and you have to have the right mindset. It doesn’t always work and I have my dark moments. But I have to have faith in myself that I can do this.

I have three young children and there is no way I’m not going to be the mother they deserve. They know I’m sick, it’s a little too obvious, but they have dealt with it well so far, because I don’t let it control our lives.

On bad days I could very easily lose control and let the pain take over. I have done and it’s awful for everyone, not just me. But mostly, I have learned that I need to take care of myself and hopefully take control of what I can and can’t do.

Exchanging

The only thing I can think of for this prompt is that next week I’m exchanging my view of my back garden for one of the beach! I’m so looking forward to getting away and enjoying a different view and more relaxed life for a few days.

Motivating

After last months dip into self pity and despair, I feel the sunshine on my face and the fact that I have a holiday due very motivating. I have my children at home on their school holiday and they help keep me motivated too. It’s so much easier not to be self absorbed when you have little ones around to keep you on your toes.

Of course, life can be more difficult too. The pain doesn’t subside just because you have more to do. And some days have been very difficult. But I keep going so I guess my children are my motivation for getting through each day, and indeed for getting through life.

Linking up with the lovely Sheryl from A Chronic Voice who gives us these prompts each month. Together we have built up a lovely community, together we are able to express our voices about our illnesses.

Controlling Chronic Pain – It’s not all in Your Head

August 5, 2019 by Anne Sweet 1 Comment

Pain, what is it?

First of all, I’m not a Doctor, I can only speak of my experience and what I’ve learnt. If you are in pain, in particular a chronic pain that won’t go away, then please seek the correct medical advice from a doctor.

Secondly, I am an advocate of an holistic approach to pain management. This doesn’t mean I don’t take my medication, the pills and infusions I am prescribed help me to survive. But sometimes, a little knowledge of holistic pain management can get me through those difficult times when I know I can’t take any more pills.

So, what is pain? We all know that if something hurts then it is pain. It can be a headache, toothache, back ache, even a stubbed toe or cut finger. It’s your bodies response to something that is ailing it.

Pain is triggered by the brain, so even though it’s very real, it wouldn’t be felt if it wasn’t for your brain. Our body, mind and what we can physically do are all connected, taking a biopsychosocial approach to pain can be benificial to anyone suffering from chronic pain. (bio – body, psycho – mind, social -physical.)

greyscale photo of a man lying on the floor showing his back — *Photo by Žygimantas Dukauskas on Unsplash*

Chronic Pain and Dealing with it

Chronic pain is a pain that has lasted for more than a few months. It may have started with an injury, or just appeared out of nowhere. It can even begin with a shock or trauma that’s not actually physical. But, it’s very real and can disrupt your life enormously. Learning ways of dealing with it and coping with life are important if you want any quality of life after suffering chronic pain.

The worst thing about suffering chronic pain is the lack of understanding, by others and even Doctors. I was lucky that I had an understanding doctor. At first I was told that I would recover in about two to three months, so when I went to see my doctor six months later, I thought he wouldn’t beleive that I was still suffering. But he did, and he arranged more tests and I eventually received a different diagnosis. I say I was lucky, because I have heard of so many people who have suffered for years and years before their doctors have believed that their suffering was real.

Dealing with chronic pain is the next step and this is also difficult. Having a diagnosis does not always mean there is a magic cure. I have actually felt jealous of people who’s suffering has been ended by traumatic operations or treatment. How crazy is that? But, it’s not crazy, not when the pain is constant, day after day, month after month, year after year. Who wouldn’t wish for an instant cure, no matter how drastic. Even then, it’s not always a guarantee that the pain will be gone forever.

So, it’s always good to have an holistic approach to hand, some way of dealing with the day to day of chronic pain. Some way you can help yourself without having to change drugs or have operations or try new treatments.

Holistic Approach.

Once you have realised that the body is all connected and that the mind can have a big impact on your mental and physical health then it’s obivious where to begin to help healing. Work on your mind!

There will always be those that this approach doesn’t work, but I am a strong believer that the mind is stronger than the body and I’ve used a lot of mind techniques which have kept me out of A&E.

So, what are these mind techniques? Some people find them easy, others not so. The best way to start is to understand your pain and find your own way of dealing with it.

Can you be relieved of chronic pain? It is possible, but not for all people. I’ve tried many techniques but the pain still continues. But, I have learnt how to manage a lot of my pain and it has made a huge difference in my life.

I think I may have had more success if my pain had a source, a reason, a specific medical infliction. My Consultant has told me that my pain can only be managed, but still I look for a cure. I’ve tried many of the drugs, the only other treatments are not readily available and not proven to have any affect. Do I really want to go through agressive treatment when I don’t even know if it would work?

A woman sitting on an empty beach in a cross legged position looking out at the sea — *Photo by Simon Rae on Unsplash*

Things That You Can Do for Chronic Pain

I think first you need to understand pain. As I stated in my first paragraph, it’s caused by brain signals to the afflicted part of the body.

Second, you need to find ways of taking control of those brain signals.

Finally, you need to have some faith in yourself.

Simple things like mindfulness and meditation can help. So can breathing exercises. If you practice these regularly they can improve your overall wellbeing but also help you connect with your brain signals.

The first year that I was sick I was asked to take part in a self awareness study and by simple weekly tasks I learnt a lot about myself and in particular how to take time out and focus on my own wellbeing. I made a lot of progress in that first year, from being paralysed to being able to walk a little. Now, it was helped a lot by my drugs and physio therapy from the hospital, but I honestly believe that I helped myself too.

The second year I went downhill when I had a new diagnosis which meant that my illness was progressive. Up until then I’d believed I was going to get better. This made me suddenly feel so much worse. I’d convinced myself that the progression was happening quickly.

Now, three years on, I know I am progressing. But I am dealing with it in my way. At first, any kind of huge spasm that stopped me from being able to breathe properly had me getting someone calling an ambulance. Now, I tell myself it’s ok, I do my breathing exercises. I stay calm and believe that it will subside, and it does.

Stress plays a big factor in my illness, if I get stressed in any way my body responds by going stiff and giving me a huge spasm. Now, if I feel myself getting stressed I go somewhere quiet (if possible) and practice my breathing exercises and just calm myself.

Sometimes I just need to sleep. I don’t want to, life is way to busy for me to take naps whenever I feel like it. But, if my body is saying sleep, I can’t ignore it. Sleep is what I have to do.

A bed with white covers with a woman barely visible under the pillow and her hand is holding a pair of glasses — *Photo by twinsfisch on Unsplash*

That’s My Story, What About You?

These things have not happened over night for me. I’ve learned how to control my pain and my reactions to it. I’m still a chronic pain sufferer and it affects me daily, but I will keep trying to defeat this illness, I don’t want to let it win. And that’s the big factor, you have to believe you can beat it.

As I said before, I did a self awareness course first. This gave me a basic knowledge of myself and how I tick. It involved a lot of guided meditations and mindfulness techniques. I found the things that made me feel better and those that made me feel worse.

Learning about the mind and how it controls your pain is a big step forward, once you understand this you can start to progress along a healing path. I’ve studied this a lot. My understanding has helped me so much but I know I still have much to learn.

This is why I have now started using the Pathways Pain Relief App. Right here on my mobile phone I can access all sorts of help when the pain becomes too much. But more than that I can learn a lot more about pain and how you can control it before it controls me.

The Pathways Pain Relief app, has a goal to relieve at least 1 million people of pain. That’s a big target, but I believe they can do better than that. The app itself is easy to use, and contains much more information and techniques that I’ve ever seen before. It isn’t free, but they do offer a money back guarantee if they don’t cure your pain…now that’s faith!

Disclosure: This post is all my own work, but I was asked to mention Pathways. I am a user of Pathways app. and this is my honest opinion of it.

Writing Prompts for July – Justifying a Chronic Illness

July 3, 2019 by Anne Sweet 7 Comments

Justifying, Starting, Analysing, Concluding, Planning

Each month I join in with a linky for those suffering with chronic illnesses. The lovely Sheryl from A Chronic Voice gives us some prompts to start talking about how we are feeling. It gives us a chance to write about things we normally wouldn’t talk about and by linking up we have become a community of people who understand. But, by writing these posts we also have the opportunity to explain to others just what it is like living with a chronic illness. This months prompts are justifying, starting, analysing, concludcing and planning.

Trigger Warning: This post mentions suicidal thoughts

Justifying

As most people with a chronic illness will understand, Justifying ourselves is something we are most familiar with. My family are always telling me I don’t need to justify myself for needing extra time to relax and recover when I’m not at my best. The problem is, I don’t actually have a best.

I am ill all the time, every day I feel like crap. Sometimes, I honestly feel like I cannot go on like this. Resting maybe helps me from total burn out, but it doesn’t really matter, when my body goes into spasm it doesn’t care about what needs to be done.

My family do not expect me to apologise for sleeping and not being able to move for hours on end. There is no need to be justifying myself.

But how can I make myself see that? I don’t need to justify myself, but I still feel guilty, because this is not me. I am used to doing everything, being in charge, taking control, being the rock of the family. But in the last three years I feel like I’m the rock that’s making us all sink to the bottom of the lake.

Starting

I know it’s been over three years, but recently I’ve been starting to accept that I have to make plans. Recently I was offered help from a health visitor. She arranged for a few extra bars to be put in place so I have more places to grab when I need to stand. Then she offered to turn my bathroom into a wet room and put a lift in my house. She believes I wouldn’t be safe on a stair lift so that was not an option.

I turned her down.

It was at that point that I realised I’d not accepted just how ill I am and that it‘s not going to get better. For three and a half years I have been searching for a cure to make me better, when in reality there isn’t one.

So, now it’s starting to sink in. I tried calling her back to change my mind but reached her answer phone and she never replied. Now, it’s too late and if I want the wet room and lift, I will have to start the process again. I don’t know if I was lucky, but it went through pretty quick last time I made my enquiries, so maybe I wouldn’t have to wait too long. But, I’m only starting to accept that they are what I need, so I’m holding off a little longer.

Analysing

I sometimes wonder if my diagnosis is correct. But it’s hard comparing yourself to other sufferers when you suffer from something so rare. So I’ve been analysing my condition more closely, finding out what makes me worse and what makes me better. I’ve also been taking a closer look at my medication and analysing what they are doing for me.

While I was at a real low point recently I asked Google about how many of my pills I’d need to take to end it all. Not just the pain. All of it, all of me. Selfish I know and I couldn’t do that to my children and my husband and family. So, I thought what would happen if I just stopped taking my medication suddenly. Then it wouldn’t look like suicide would it?

I get these low points sometimes, but I don’t want to hurt my family, so I know I wouldn’t go through with it.

Then I was researching care homes. That way, I could just get away from it all, take away all the pressure off me to ‘perform’ a normal life, and all the pressure off my family for dealing with me. But, I would miss my family too much.

Analysing my feelings I realised that I was depressed. I am depressed. I always have that black dog biting at my heels. But I keep him on his leash. Too much life in me just yet.

Concluding

My conclusion is that I need help. My GP would probably just offer me more pills to my huge collection. I already take anti-depressants, so what’s the point.

I need to help myself and that’s my next plan!

Planning

So, we come on to planning. Keeping busy with things helps a lot. I love my crochet and listening to my audio books. I also love planning, so much to plan for and that’s what keeps me going.

We’ve just celebrated the first birthday of four in the next six weeks. So, it’s Boo’s birthday next so I need to plan some treats for her. Then a couple of weeks later it’s the Little Man’s birthday. Just two days after the Little Man’s birthday we go away to Cornwall. I haven’t been to Cornwall for many years so that’s something to really look forward to. Then a few days after we get home it will be Star’s birthday.

So much to look forward to, so much planning to do. There is no time at all to think about how crap and useless I feel. Even if the best I can do is plan from my laptop, or my book of lists, then that’s what I will do.

Selfish

Not one of the prompts but something I wanted to add. One of the things that made me realise that I couldn’t go ahead with ending things is that one of my longtime online friends is currently in a hospice after a long battle with cancer. She fought long and hard and tried everything to stay alive. She was doing it because of her family. My heart goes out to them.

Thinking about her made me realise that I was being selfish. My family need me too, and although I may have to leave them at some point, I‘m going to fight this stupid condition to ensure it won’t take me anytime soon. There is nothing more enlightening that realising that someone else is losing their fight when you are thinking of ending yours.

I’m in it for the long run, if I become even more useless I’ll still be here to watch my children grow and live their lives. I’m not going anywhere without a fight.

June’s writing prompts can be found here

Star, Five Years Ago

June 11, 2019 by Anne Sweet 16 Comments

This time five years ago I was sitting on a hospital ward with Graham waiting to hear news of Star who was in the operating theatre.

This was the beginning of the end of an eighteen month journey which started when Star woke up one morning with a wonky neck. We took her to the GP who told us she had tonsillitis. I knew he was wrong though, so I took her to A&E. They said she had a torticollis and would be fine in 48 hours. She wasn’t, she got worse. Sometimes as a parent you have to tune into your instincts, even when the Dr’s turn you away, you have to persist if you feel something is wrong.

Three more trips to A&E and eventually they listened to me and did a scan. She was admitted immediately. One of the discs at the top her spine had twisted out of place. She was give a bed and some muscle relaxants, when they didn’t work we were told they were trying to find a traction bed. We were allowed home for the weekend with Star in a neck collar. When we arrived back on Monday morning the traction bed had been found and it looked like some kind of Victorian torture contraption. Thankfully they decided against using it and Star was sent home again.

Sadly, it didn’t stop there though because they started small and worked their way up with treatments. Physio made her worse, medication made her worse and eventually she was taken to theatre for a manipulation to put the bones back into place. She came out of theatre in a halo, which is not as nice as it sounds. A metal ring is screwed into the skull and it has four long poles which are attached to a plastic vest. It cannot be removed unless by a surgeon.

It was horrific, but after a few months we were quite used to it. My little Star was just eight years old at the time.

She even had to wear it in bed.

It Didn’t Work

As soon as the halo was removed in march 2014, it was obvious that it hadn’t worked. Star’s neck flopped back into it’s former abnormal position and she was back wearing a collar. We were so down about it, but Star took everything in her stride.

Then we heard that she would have to be fixed with screws and titanium plates, it was the only option. This involved two operations, the first was on 9th June 2014 where they manipulated her again and replaced the halo. Then two days later they took her for her plates and pins. The bone had deteriorated so much they had to do a bone transplant from her skull. The operations took hours and all we could was wait and pray that she would be okay. While staying in hospital we had been witnesses to two child deaths on the ward. It really is a horrible situation to be in and I wouldn’t wish it on anyone.

Star was back on the ward at 7pm, half her head shaved and the halo in place for another three months.

A Life Time Ago

In one sense it feels like it was a life time ago, so much has happened since then and my little girl has grown into a young woman of almost fourteen years. In another sense I can remember everything about that time like it happened yesterday. It is difficult to even begin to imagine the emotions you go through while waiting for your child to be returned. And the hospital was like a second home, we didn’t go to outpatients for appointments, we just went straight to the ward. We knew everyone, and everyone knew Star.

Now my girl barely remembers it all now, well apart from the nice thing like the toy room on the ward. She remembers her home tutor that she had for a whole year while recovering, and not having to go to school. Surprisingly has forgotten about the halo she wore twice. She even forgot about her scars, well she can’t see the one on the back of her neck or head. She has noticed the ones on her forehead but they are disappearing well.

The Future for Star

During all this time it was discovered that Star had a connective tissue disorder and she was eventually diagnosed with Elhers Danlos Syndrome. Since then she has been seen by a geneticist who believes she may have a different connective tissue disorder and is convinced she has Marfan Syndrome. There are more tests to be done because the test for Marfan Syndrome involves the febrillin gene and Star doesn’t have that. But, there are 3000 different mutations of the gene so her DNA is being tested again. She is also having her chromosomes tested as the geneticist thinks there may be a connection between her physical disabilities and her autism.

In the meantime, Star is working hard at school and will be doing her GCSE’s next year. She gets a lot of help and support and the school, although mainstream, are very understanding. I do have hopes that her future will be fine so long as she gets the extra help after leaving school.

I worry so much about my children, especially now that I am sick. While Star was ill I was running around like crazy, taking the other two to school and nursery and the older kids to college. Taking Star to her appointments at the hospital, or even taking it in turns to stay with her overnight. I was fit and able to deal with getting up several times every night. I managed that, but if any of my children needed me like that now I would not be as much help.

It’s hard to imagine how different life was five years ago, but that day changed everything and most probably saved my daughter’s life.

MomOfTwoLittleGirls

June Prompts, Repeating, Wondering, Turning, Getting, Desiring

June 3, 2019 by Anne Sweet 20 Comments

I’m going to try and use this month’s prompts from Sheryl at A Chronic Voice, to express myself. I often gloss over a lot of the effects of my illness, in particular after I was accused of moaning too much. I’ll explain more as we go along.

Repeating

I use an app on my phone which prompts me to say how I feel throughout the day. It’s called Daylio and you can set it to reflect the things that affect your life. I find myself repeating things over and over and my most common moods and feelings are ‘overwhelmed’, ‘stressed’ and ‘pain.’ It pops up, and I click to let it know how I’m feeling, a constant reminder to let me know just how awful it all is. The idea was to keep a record so I could be more honest when I visit the consultant, it’s easy to gloss over the awful.

However, always the optimist, I tried to inject some positivity to my days. I added a daily prompt to think of something I’m grateful for. There is always something, whether it’s just a nice cup of coffee made by my daughter, or a gift in the post that I wasn’t expecting. It has made a difference to my monthly chart by this little repeating high each day. It’s not huge things on this mountain I’m climbing, but the little spurts of joy I have to grip onto.

Wondering

I’m always wondering whether all the drugs I take are helping me or not. The easy way to find out is to miss a couple, but this just proves that I can’t do without them.

I also wonder if people actually understand at all what I’m going through. My family seem to think that I am getting better, when I don’t actually feel that at all. Maybe they are in more denial than I am? I find that connecting and speaking to others who are chronically ill makes me feel less alone in my suffering. It’s hard to talk about suffering, no-one really wants to hear how difficult life is all the time. No-one really wants to know because they don’t know how to react and there is only so much sympathy they can give. It’s not sympathy I want though, in fact it makes me squirm a little. What I would really like is empathy and understanding.

In reality, though, no-one understands the suffering of another person, it’s all relative. If you’d have said to me four years ago, how would you feel if you were in pain every day and unable to walk, I’d have had no idea. It’s no wonder that no-one else understands.

Turning

I have pondered over this one quite a bit. I could say how I’m turning into a statue, but I really hate that term. Stiff person syndrome is often called Tin Man syndrome because it’s sufferers turn stiff, but this seems to be a different experience for those with the condition. I have a particular form of the condition, progressive encephalomyelitis with rigidity and myoclonus. I’ll explain each term in turn;

Progressive: it will get worse
enchephalomyelitis – swelling on the brain and/or spinal cord
rigidity – becoming stiff or ‘rigid’
Myoclonus – jerking, spasms, involuntary muscle contractions

I’m not turning into a statue, but each part of me can become stiff, either for a little while or permanently. Medication can help, but there are certain muscles that have been stiff since my first attack 3 1/2 years ago and they haven’t improved. The IVIG has helped with the myoclonus, I rarely jerk now, which makes it a little more comfortable being around others.

Getting

The hardest part is getting people to understand. When the condition is so rare not even the doctors understand what is happening to me, how am I supposed to explain it to others. I’m told constantly by family and friends that I look like I’m getting better, when I know I am getting worse. I can only assume that I am getting better at dealing with it all.

Well, actually, I know I am getting better with dealing with it all. I used to panic when the pain in my chest got so bad I could barely breath. Now I just relax and deal with it, I know it passes eventually. I would panic when my body would go into completely stiff spasms and render me paralysed, now I just get on with it. It hurts, but it doesn’t last forever. I used to freak out at the fact that I was constantly in pain and it just wouldn’t stop. Now I just accept it and carry on. And sometimes I carry on a bit too much and end up getting myself into such a state that all I can do is nothing at all. When life throws this kinds of crap at you, all you can do is get on with it.

Desiring

What am I desiring? Well, it could be a cure, a medicine that works and makes me feel good again. I could desire some real understanding from someone else, not sympathy, but empathy and the right kind of care.

Or maybe I could desire the ability to walk again and get on with my life like before, to run around with my kids, to drive my car, to go out alone, to go back in time and stop this condition from taking everything away from me.

What if I could keep it simple and desire a lovely holiday with my family, the ability to sit on the beach and enjoy some fun with my children. It’s the simple things that keep me going.

Or an evening at home when everyone is in a good mood and chatting and the television gets drowned out. And there is laughter and joy and for a while the pain really doesn’t matter at all.

Linking up to Sheryl from A Chronic Voice, for June’s Link Up Party

You can read my May Prompts Here