chronic illness

Chronic Illness – Welcome to 2020

January 6, 2020 by Anne Sweet 6 Comments

Welcome to 2020

This is my monthly link up post where I join in with the lovely sheryl from A Chronic voice and give my ideas on her writing prompts.

The prompts this month are Purging, Seizing, Opening, Revamping and Envisioning. Welcome to 2020!

Purging

Getting rid of stuff, hey I really need to do that. I need to keep my house clearer to assist my mobility. At Christmas time when the kids had their toys all over the floor, it made me very unstable and I even had a fall landing on my daughter. (I didn’t hurt her.)

The Christmas toys and decorations have gone now but it’s made me think of how I can get rid of more things to make more space. In particular my bedroom. I’m slowly getting there in getting it all sorted out, but there is so much more I need to purge. I will be needing a lot more space in there later this year.

I have also purged my kitchen cupboards of tins and jars that we will never use. I’ve asked my husband to take them to the local foodbank. Hopefully they will be more useful to others in need and it’s a great way of making more space while helping someone else. Of course, all the outgrown clothing goes in the charity bags too.

Seizing

I wasn’t sure what to write here but at times I really feel like giving up altogether, so I guess those are the moments when I seize every day. It can be hard living each day in pain and not being able to do things you used to do, but sometimes you have to seize the moments you can and make the best of them.

These days those, most of the seizures happen within my own body, but I will keep fighting and find a way of getting rid of them.

Opening

I’ve had my eyes opened a lot over the past four years. A lot of my previous thoughts and beliefs have been turned upside down. It’s not a bad thing although it hurts at times. Especially when you find that trust isn’t kept and ideals not shared.

I have always believed myself to have an open mind but in fact it’s been very closed. This year I will open my eyes even more and instead being shocked and dismayed I will do it with understanding. Everyone is different after all.

I’m also going to open my mind to other kinds of therapy. As the song goes ‘The Drugs Don’t Work’ they may help a little but I want more. I used to have so many things I believed in, I thought the mind could heal anything. So maybe it’s time to start thinking outside the box, or even the consultants office.

Revamping

I need a lot of revamping in my life. I am going to change my daily routines and give my soul a revamp. I think this will call for a lot more organization and work, but that’s maybe what I need. I have too many things going on, I always do, but if I can organize them I can give them the attention they need. First of all I need to decide what I can and can’t do and to focus!

Also, there will some revamping of my home, if you can call it that. This year I’ll be having a new wet room installed so I won’t be risking my life everytime I take a shower. I will also be having a lift put in so no more stairs for me. Some days going up and down the stairs is my worst nightmare.

Envisioning – Welcome to 2020

Each year I make sure I have a lot of things to look forward to, whether it’s a holiday, a trip to the theatre or a new project. There always has to be something to keep me going.

This year I think it’s time to think bigger and better and do those things I’ve always wanted to do but never managed. If I can envision it, I can do it, right? Watch this space!

December link up Post

December – Life with a Chronic Illness

December 2, 2019 by Anne Sweet 9 Comments

Each month I join up with Sheryl from A Chronic Voice for some writing prompts aimed at living life with a chronic illness. This months writing prompts are Travelling, Bonding, Warming, Coping, Ending.

Travelling

I don’t do much travelling around this time of year. My family are all close by, and the only ones who are not come to visit us. This will be on December 14th.

In November, I only left the house three times, and one of those outings was an hospital appointment! The other I was only out for an hour, and the final outing was on the very last day when we went to the local Christmas Tree lights festival. (Anyone who follows me on Social Media will have seen me saying that I’ve only been out twice in November, but that’s brain fog for you, I completely forgot about the other time.)

I will be going out more this month (Fingers crossed) but not really travelling much. I have booked our holiday for next year though. It’s still in the UK but I love a seaside holiday. I have also realised that as my kids get older these families will become a thing of the past. I still remember when my eldest kids became to old to come on holiday with us. I even remember when I got too old to go on holiday with my Mum. I feel sad, but maybe it will give me an opportunity for more travel seeing as it will cost less paying for so many children. Let’s just hope I stay healthy enough.

Bonding

We have had a week of a sickness bug running it’s way through the family and suddenly I have had children again and plenty of bonding. In particular, my Little Man. Instead of wanting to be glued to a laptop or phone or other device, with his headphones on and seemingly in another world, he has spent time talking to me and we even cuddled up together on the settee one day and watched a movie together. I think we all need this special time, either as a family or just two of us. I also got to watch a movie with my husband which rarely happens. He’s generally more interested in watching the sports channel upstairs, sometimes life is too hectic for this kind of bonding.

In past years Christmas was always a time of bonding as my Nan, who was the glue of our family, would bring us all together for the holiday. She left us many years ago now and the family drifted further and further apart. In fact I barely see any of my cousins, aunts, uncles, nieces, nephews and so on. I don’t even see one of my brother’s. So it’s just Graham’s Mum and brothers and my eldest brother and his wife. It seems so distant, those days of a house full of relatives, when the furniture would be moved around to fit them in and the chairs from the kitchen dotted around the living room.

These days the only bonding I get with my extended family is through sending Christmas cards. And sometimes I don’t even manage this.

Warming

I suffer so much from cold weather, even at home I find myself covered in blankets and layers of clothes just trying to keep warm and the pain at bay. Sometimes, you just have venture out though and that’s when the warmer clothes come in handy.

In no particular order, the things that make me feel warm in December are;

Hot chocolate with cream and marshmallows (And maybe a tot of Baileys)
Christmas Carols, I love them and know all the words
Believing in Father Christmas, the kids might be getting older but I will always believe in him as it gives me a warm fuzzy feeling.
Christmas bells, we are lucky to live near a carrillion which plays the most wonderful Christmas music on a Saturday afternoon.
Christmas feel good movies. I can watch them all, no matter how corny.
Christmas decorations, trees and lights. I get a warm fuzzy feeling just looking at them.
A lovely real fire. We don’t have one, we don’t even have a chimney (But it’s okay, Father Christmas has a magic key) but I can put the You Tube video of a real fire on my TV and put my feet up in front of it. There is no heat but it still makes me feel warm.
Christmas food..yummy, everything from chocolate to brussell sprouts. I love Christmas dinner with all the trimmings, and all the treats and deserts that are okay to indulge in over Christmas.

And there is nothing nicer than coming home after a cold outing to a lovely warm house, or cuddling up on the sofa with a blanket, or getting into a lovely warm bed. There are so many ways to feel warm.

Coping

This is a big one for me this month. I stopped my treatment, on advice from my consultant, nearly three months ago. So it’s probably completely out of my system now. It’s been hard and I’ve almost phoned the hospital on many occasions to ask them to give me my treatment (my consultant said I could do this any time.) But, on the other hand, I’ve coped better than I thought I would, and although I’ve gone backwards on many things, I’ve also noticed that some of the side effects are starting to disappear.

That’s one of the problems with a rare chronic illness like Stiff Person Syndrome, no-one really knows what will make it better, and everyone who has it reacts differently to treatments. So coping is the best I can do.

As for the season’s festivities, I cope with them by taking everything slowly. There was a time where I’d be in a tiz if my decorations were not put up on December 1st, but we have a lot on in the following week so I doubt my husband will be able to get the decorations out for me any time soon. We will also have to move furniture, something I can’t do. The Christmas shopping is mostly done online, so that’s how I cope with that. Along with very careful planning.

Ending

The end of the year, such a bittersweet time, especially as you get older. I often wonder if this will be my last year on this earth, will I even make it through another year. I often wonder how I will make through a night so this is not an isolated feeling. Some people say they are glad to see the back of the year, especially when things have not been so good. But I always look back and think of all the positive acheivements I’ve made. The bad times don’t just disappear, but it’s much nicer thinking about the good times, and there is always more than you think.

In past times the period between Christmas Day and the New Year has brought much sadness, grief and pain. It’s a difficult time for us as a family and we realise that all we have is each other, so we try to spend the time quietly, bonding with each other and coping in our own way.

I was admitted to hospital on New Years Day 2016 which is when my chronic illness journey began. So this year it will be four years sick.

Thanks for reading. I’m linking up with Sheryl here and you can click through to see other bloggers interperete the same prompts.

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

October 1, 2019 by Anne Sweet 15 Comments

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.

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.

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

Blotgober Day 1 – All You Need is Love
Blogtober Day 2 – Coppafeel- Breast Cancer Awareness
Blogtober Day 3 – Out of Spoons (a poem)

Blogtober Linky

See Other bloggers Blogtober posts.

The Meaning of Life, the Universe and Chronic Illness

September 2, 2019 by Anne Sweet 16 Comments

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.

Regrouping, Investigating, Boosting, Setting and Reviving

May 6, 2019 by Anne Sweet 15 Comments

Regrouping

I think when it comes to my health I am regrouping things all the time, it’s always a game of catch up. It’s hard sometimes to prioritise so things go astray, but occasionally I have to regroup and get it all back together again. I guess it’s the same for everyone, we all fall behind at times. But when you have a chronic illness it seems that regrouping things together again is a constant theme.

In the last month I have been regrouping my appointment letters and getting my calendar up to date. It seems a lot has been going on with me, Star and the Little Man.

Investigating

At the hospital last week I arrived on the ward to find two other Stiff Person Syndrome sufferers. Of course, my seat was right in the middle. The one female I see every three months when our treatment coincides, but I don’t have much contact in-between apart from the occasional text. The other Man I met on our Facebook support group and I’ve met him at the hospital once before.

It’s kind of strange how we all have the same condition but are all so very different. The female has had SPS for a long time and the treatment is working well for her, plus she has a fighting spirit and won’t let it beat her down.

The man is older and has other conditions, but still he can walk and drive whereas I can’t. But, then I do have a specific form of the condition which makes it worse for me. My bad luck!

Back to the Investigating. We asked the nurse about some treatments we had heard about and he gave us the full run down. I won’t bore you with the specifics, but it’s so different reading up on things like stem cell transplant or Rituximab on the Internet, than it is listening from the medical profession. In particular one who has experience in experimental treatments.

The long and short of my investigations are; I’ll not even try for stem cell transplant unless it’s my last hope. But I will see if my consultant manages to get funding for Rituximab. However, having heard how expensive it is I’m not holding out much hope.

Boosting

I am always trying to boost my health with my diet. After all, what you put in makes such a big effect on how your body reacts. But the other big thing is boosting your mental health.

Mine has taken a big dip in the recent months, but I really want to try and make things better again. I have a lovely retreat planned in a couple of weeks which will give me a boost, both in confidence and mental health.

I’m also exploring ways of increasing social activity because I know that sitting home most days is not doing me any favours. I don’t mind being alone, I have plenty to keep me occupied, but there is something about getting outside of the house, or just interacting with others that gives me a boost.

Setting

Last month I set myself a goal of getting out of the house once a week which I’ve kept to, often going out more than once.

I like setting goals and I’ve a few crochet ones that I have for May. I’ve also set myself a goal of reading/listening to four books this month.

Reviving

As I do spend a lot of time at home I think it’s time to revive the tired decor. In particular the living room. I have just to wait for someone to actually do the work now, and I’m hoping it will be real soon. Then I can order my new carpet.

I’m also hoping to get my bathroom revived, or rather re-structured as a wet room. We have a family room upstairs but the downstairs shower room is the one I have targeted. A wet room would make my life so much easier and safer.

So that’s my interpretations on the prompts this month from A Chronic Voice Blog written by the lovely Sheryl.

You can read my writing prompts for April here.