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Disability

All You Need is Love, waiting, perservering & affirmation.

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This is my monthly post which I link up with Sheryl’s Chronic Illness link Up Party. This month I’m talking about Waiting, Parting, Perservering, Affirming and Love. This is also doubling up as my first Blogtober 2019 post.

All you need is love, waiting, perservering and affirmation. A cord heart tied on a branch

Waiting

Last month was not a good month. I’m still waiting for test results, but this is the second lot and the first came back clear. If these are clear then once again my symptoms will be put down to Stiff Person Syndrome. When you have a chronic illness, everything that goes wrong seems to be blamed on your current illness.

I’m also waiting for my daughter’s genetic and chromosome test results. I know these take a long time, but when the time I was given arrives I always get anxious. I’m praying so hard they don’t find something serious. Coping with her illness was hard enough when I was well, I can’t bear the thought that she may have worse to come.

Parting

In August a friend I’ve known for about 15 years passed away after a long battle of cancer. She was buried last week. It was a sad parting. I still can’t believe she’s gone. I’m not afraid of death, but grief is so hard to deal with. I hate to think of the suffering of my friends family, especially her husband who is not well himself, and her two children. It’s so sad.

This month is Breast Cancer Awareness Month. I’ll be posting about it on my Social media accounts. This affects so many people, more needs to be done to help. Ironically, yesterday I had my first ever mammogram.

Perservering

Oh my, this has been a tough month health wise. I’ve suffered so much. Some days I feel I can’t go on like this but it’s my family that keeps me going. There is no way I would leave them intentionally so I have to keep perservering with trying to make life better for me and for them. Some days it’s so, so difficult to carry on. I don’t want to feel like this anymore. I want to carry on with my life and do all the things that need doing, but sometimes even the simplest tasks take so much out of me.

What choice do I have? Sometimes it seems hopeless, I keep suffering and I know my family suffer by watching. But I will keep perservering in trying things that will make things better for us all.

“Life is waiting for you. You might be stuck here for a while, but the world isn’t going anywhere. Hang on in there if you can. Life is always worth it.” 

― Matt Haig, Reasons to Stay Alive

Affirmation

I truly believe that the brain is stronger than the body. Mind over matter. Sometimes it’s all I have. So I continue with the self help, keeping my affirmations, telling myself that I can get better and believing it. I take time to live in the moment. I love reminiscing about the past, but it won’t make it come back. Making plans for the future is fun, but you can’t live something that hasn’t happened yet. So, the only thing you can do is live for today. Get through one day at a time, good or bad and look for the things that make me happy.

I love my Little Man and Boo coming home from school and coming to give me a hug. Star is not the hugging type, she’s like huggin an ironing board! I was feeling unwell the other day and she gave me a very rare hug, it meant everything to me. The hugs off my children keep me going, even my big kids hug me. (As a side note, I barely remember hugging my Mum, apart from when she was in hospital, and after she had died. I guess I was an ironing board too, but my kids have taught me otherwise.)

Back to Affirmations, I’ve been reading a lot of Matt Haig lately and he seems to speak to me. I love this quote.

“Make sure, as often as possible, you are doing something you’d be happy to die doing.” 

― Matt Haig, The Humans

Love

As I said, I’ve had a bad month health wise, so reading has been my friend. I’ve loved reading Matt Haig, but I’m also halfway through a very sweet classic book, I Capture the Castle by Dodie Smith. I think I may stear away from some of my usual murder mystery type novels and maybe add a little romance to my reading. After all, they say, all you need is love.

“No one will understand you. It is not, ultimately, that important. What is important is that you understand you.” 

― Matt Haig, The Humans

I’ve never really classed myself as a romantic. I’ve always found the conception of love quite difficult. I mean with family it’s unconditional and that love I find comes naturally. But loving others I find difficult. I think my life needs a little more love.

When my friend passed recently, it was obvious how much she was loved. Am I loved like that? I thought that the way to find love was to please people all the time, or shower them with kindness or help. But, some people just don’t respond in the way you would expect. Love is a strange old thing, and I don’t just mean romance.

“Maybe love is just about finding the person you can be your weird self with.” 

― Matt Haig, Reasons to Stay Alive

Thank you for reading my round up this week, by clicking the picture below you can visit Sheryl’s link up and see how other’s have interpreted these prompts.

October link up party

Read last months writing prompts here, The meaning of Life, the Universe and Chronic Illness.

blogtober 2019 around a pumpkin on a dark wood background.

Blogtober Posts

Blogtober Linky

See Other bloggers Blogtober posts.

“3

The Kuga, Our New Car

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Ford Kuga

our new car, a Ford Kuga

Meet our new car, a Ford Kuga. I think it’s pretty nice. It’s not exactly what we wanted and I can’t drive it because it is not adapted. But it’s still nice to have a new car.

Motability Scheme

We get our cars on the Motability Scheme.

The Motability Scheme enables anyone in receipt of a higher rate mobility allowance (such as the Enhanced Rate of the Mobility Component of Personal Independence Payment or the Higher Rate Mobility Component of Disability Living Allowance) to use their mobility allowance to lease a car, scooter, powered wheelchair or Wheelchair Accessible Vehicle. The Scheme provides flexible and hassle-free access to a brand new, reliable vehicle of your choice – giving you greater freedom, everyday.

The cars are not free, you give up your benefit, or part of it, to pay a monthly lease fee. The car does not belong to you at any time and can be taken away if your benefit stops. After three years you have to give the car back, but if you are still entitled you can choose a replacement and start again.

Benefits of the Motability Scheme

When you think about it, it’s a pretty expensive way of getting a new car. You can buy a new car for the same weekly price (or less) and the car will belong to you. But the Motability scheme comes with many benefits such as:

  • Insurance for up to 3 named drivers
  • Break Down Recovery
  • Services and MOTs
  • Adaptations that would cost a fortune to have fitted yourself

When you add it all up it is worth it. Even when both myself and Graham were in full time work. (Before I got sick) we couldn’t afford a new car. My cars (As I was the only driver then) were usually second hand and pretty old. We’d end up having to fork out loads of money for MOTs and repairs. And I had to pay seperately for Break Down Recovery. I had built up a 10 year no claims bonus on my insurance, but even that was an extra expense.

Why Do We Need A Car?

When I first got sick in 2016 we already had a motability car for Star. She’d had surgery on her spine and was too ill to go to school for 11 months. The criteria changed for being accepted for a car and we no longer qualified for Star. She’d recovered from her spinal surgery, but the condition that caused it was still present. However, because she could walk more than 20 metres the car was taken away.

At the time we didn’t mind. I was the only driver and I had been unable to drive for two months anyway, so the car was just sitting there. We would have been sending it back as soon as we’d got around to it, but I was still hopeful of recovery at the time.

Then I was loaned a wheelchair from a friend and I started being able to go out again. We soon learned how difficult it was getting on buses with a wheelchair, especially ones full of pushchairs and prams. Travelling was a nightmare. We even went on holiday by train, the holiday had already been booked and paid for before I got sick, so we didn’t want to waste it. The journey involved two trains, all our luggage and three young children. It wasn’t enjoyable.

It got to the stage where I didn’t want to leave the house, going anywhere at all was a pain. Long times in my wheelchair where causing even more pain. After six months I also realised that I was not going to recover.

My First Adapted Car

When we qualified again for a Motability car I went to see about getting on with hand controls so I could drive again. We had a Skoda Yeti which had a push and pull hand control with a little indicator on the top, so I could do everything with one hand. This left only one hand to steer, so I was provided with a knob to put on the steering wheel which made it much easier to turn.

It took a while to learn how to drive it, and we had some freedom back for a while. At the same time Graham was learning to drive as well.

Giving up Driving

I drove the yeti for a few months but when Graham got his licence I handed the wheel over to him. I barely drove again, not only did I never really get used to hand controls, I found it painful to drive. And although I was given the go ahead to drive on my medication, the letter states that I should do so only if I felt I was able. Which was not very often.

When it was time to replace the Yeti we decided not to have adaptations on the Kuga and I gave up driving. This made me feel much sadder than I expected and kind of took the shine off receiving our new car. It didn’t help that the new car is manual when the Yeti was automatic. Graham was so used to driving automatic it took him a couple of weeks to get the hang of it.

Getting used to the Kuga and not driving

I’m feeling a little more happier about it now. I didn’t learn to drive until I was 30, up to that point my ex husband had done all the driving and I was quite happy just being a passenger. When I was single again I decided that it would be nice to drive myself and passed my test after just a few months of lessons. It seemed I was a natural. I loved driving and I’ve clocked up many, many miles over the years I was behind the wheel. Giving up was hard, but I know it’s the best choice really. Ironically, the last time I drove the Yeti was to give my ex husband a lift earlier this year.

Now I’m back to being a passenger, and Graham is getting used to driving the Kuga. It really is a lovely car and so comfy. Mabye I’ll drive again one day, but for the next three years I’m just going to be chauffered.

More Information.

If you would like to know more about the Motability scheme you can visit their website. You can also visit The Big Event which is held at the NEC every year. Another exhibition at the NEC for lots of information on disability (including cars and Wheelchair Accessible Vehicles) you can visit Naidex for free.

The Meaning of Life, the Universe and Chronic Illness

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It’s time for my monthly writing prompts from the lovely Sheryl at A Chronic Voice. This week I’m looking at the meaning of life.

Finding

I laughed when reading this prompt. It seems like I’m forever searching for stuff lately. I can’t remember where I’ve put anything and it drives me and my family nuts. I’m not the only one though, the rest of my family are just as useless at finding things so I don’t think this is down to my illness but probably an inherited trait.

But on a deeper level I’ve been looking for the meaning of life and wondering why some people have it so much more difficult than others. Is it true that there is a form of re-incarnation, where karma plays a part? If that’s the case then I must have been something real evil in a previous life and now I have to pay for it. The more I look into my life as a whole the more I find that things have been pretty crap since I was a very young child. Not just health wise.

However, I do appreciate every day the good things that have happened in my life, even if they went from good to bad, at least they were good for a while and that’s what I have to focus on.

It’s not Just Me!

Then I hear of other’s stories and realise that so many people have such crap lives and it is actually a very few that have blessed time while here on earth. (And even those I know who outwardly seem to have blessed lives are still hiding some dark times.)

So in conclusion, I’ve found that life is pretty crap!
But, we are only here for a short time, and for some, it’s far too short. So, as a positive minded person, I have to make the most of the time that I’m here and try and make it better for those around me too. At least then I will feel that life really does have some meaning.

Life has no meaning. Each of us has meaning and we bring it to life. It is a waste to be asking the question when you are the answer.

Researching

I’m constantly researching the effects of my illness, I think it’s one of the natural things you do when you have a chronic condition. I am keeping a log of things and have some ideas for my consultant next time we meet. I don’t think my current treatment is working so well, and I’ve always asked for more. Well, this month I went to my GP and asked for less! Yes, I requested a reduction in my medication. Sometimes the side effects are worse than the benefits and it’s so difficult to work out.

Earlier this year I was having heart problems, I had severe palpitations which at times made me think like I was dying. But it turns out that a change in my medication was all that it took to lessen them. I’m not completely cured but it’s gone from happening almost every day to once or twice a month. It was only through researching my medication that I worked this out. The Doctors were too busy looking for reasons within my body for these symptoms, attaching me to machines and recording my heart patterns. I researched the reactions of my medication and which worked best for me.

We humans are amazing creatures, every one of us is so different in body and mind. Sometimes Doctors, even though they are brilliant, work too methodically to realise this and often miss the real meaning behind what’s happening

Dating

I wasn’t going to answer this as I’m a married women. Dating is not something I do. I don’t even have ‘date nights’ with my husband. But, if I’m honest, dating is not something I’ve done much of all my life.
I met my previous husband at the age of 16 and he was my first serious boyfriend. When we split up, I dated a total of two guys before meeting my current husband. I’m no expert on dating.

But, when I did meet my current husband I decided that I was never going to get married again. He was never happy about that but we spent many years together. Then when I got sick (my illness happened quite suddenly) he stuck by me and wanted to do all he could to help me. I hear so often in the chronic illness society about relationships just not lasting because the partner couldn’t manage with their loved one’s illnesses. But Graham was prepared to stick around no matter what. So I married him and we are just coming up to our third anniversary, despite being together for eighteen years.

If he did leave me, then I don’t think I’d even bother trying to date again. I know it’s never the end of the line and that there are plenty of older guys out there that would probably make suitable partners. But honestly, sometimes looking after yourself makes it way too difficult to factor someone else in, so I’d probably just stay alone.

Reusing

I’m taking this as a prompt to write about recycling or changing from throw away products to protect our earth. I hate it when people who are trying to be more ‘green’ get labelled as ‘snowflakes.’ Our planet is our most precious resource, of course we need to protect it.

Sidenote: I hate the term ‘snowflake’ as being used as a derogatory word anyway. One of the most beautiful things in life are snowflakes and each one is individual, just like us humans. So, in fact, every one of us is a snowflake anyway. And trust me, any one of us can melt away in an instant too.

I have recycled for many years but I’ve stepped up the mark lately by cutting down hugely on resuable plastics. We’ve gone back to using bars of soap instead of plastic bottles and flannels and cloths rather than throw away wipes. I went one step further this week when my son complained that his duvet was not keeping him warm. Instead of throwing it out and buying another. I found an older duvet and put both inside his cover, all it needed was a quick wash and freshen up and now he has a big thick duvet ready for the colder months.

I could go on and on about reusing and saving our planet. But that would be a whole blog post on it’s own.

Recounting

I’ve already touched on recounting the good memories and weighing them up. I may have had a lot of bad things in my life, but there have been good times to remember. I had a lot of memories come up recently while clearing out my old wardrobe and going through old photographs and memory boxes I’d created.

One thing I was thinking about recently was how quickly things change. I remembered all the times when we were going through difficult times and now they are just distant memories. Recounting past experiences can be therapeutic.

I remember when my daughter was young and I knew I had diary that I’d written while my eldest daughter was the same age. I decided to read through it and suddenly realised that it had been one of the worst years that I’d ever experienced (up until that point anyway!) But, I’d gone there because I’d wanted to recount the good things about my baby girl and it saddened me that these good times had been overshadowed by the bad…but only in my writing..in my head it was still good. The brain is an amazing tool.

Finding Meaning.

So, in life, no matter how awful, we have to focus on the good. One good day a month maybe the only thing I can acheive these days, but it doesn’t matter. Even on the worst days I can do something worthwhile. I love creating things and I’ve found crochet extremely therapeutic. I love reading and absorbing stories, I get excited and engrossed, and even though it’s not my life, it’s something I can ‘live’ even for a little while.

I’ve also discovered the power of Netflix. I haven’t been such a television addict for many years. But now there is nothing I like more than waiting for the kids to go to sleep and then switching on a program or series that I can truly lose myself in. It’s not wasting your life, it’s enhancing it. Giving you those little thrills, whether it’s enjoying something else’s romantic encounters, being on the edge of your seat with the thrills, or even feeling scared. When you can’t get out there yourself and experience these emotions it’s good to find them in other ways.

Twin Mummy and Daddy

Writing Prompts for August

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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.

lady on the beach

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

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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.