hope

Life With a Chronic Illness

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

Word of the Week 22nd November 2018

by Anne Sweet 12 Comments

Hello and welcome to the new home of Word of the Week, a nice and simple weekly linky, with everyone welcome to pop by and share. You reflect back on the past week and sum it up in one word. Then share your word with us in a blog post, with as little or as much explanation as you like.

There are not too many rules with this linky, just remember to read at least another couple of posts in the link up after adding your link. Do try to stick to the theme of summing your week up. I will read and comment on all posts and tweet them out for you. Please add the badge below to your post so that others may find us and join in. If you comment or tweet then please use the hashtag #WotW

If you are unfamiliar with the Word of the Week linky then please feel free to ask any questions. New linkers are always welcome, we love to hear what you have been up to in the past week.

My Word of the Week

My word of the week this week is Hope.

I have had a really awful couple of weeks, I could have chosen something more sombre like, depressed, moody, gloomy, bleak, sad, grim, miserable….you get the picture I’m sure.

I have been poorly, I spent most of last weekend in bed and that’s really not like me, I generally just keep soldiering on. But I’ve been floored and not wanting to do anything but sleep. It’s not just me though, my eldest daughter has been ill too. She too had an awful weekend but still dragged herself into work on Monday. It didn’t help though and on Tuesday she ended up in A&E.

I don’t know if it’s just our hospital but we always seem to get fobbed off, it’s definitely a time and number game. How little time it takes them to see and discharge a patient seems to be more important than actually listening to the patients problems. Both me and my daughter are red card patients, which means if we present at A&E we need to be seen quicker. But, it doesn’t meant that we get listened too.

This time I just couldn’t take it though, I refused to take her back to the GP as the doctor was telling me. I told them she needed proper help and soon and we were not going anywhere until she got it. Then, low and behold, they found out that she was an urgent referral for a specialist and gave her an appointment date for January. I still wasn’t happy though, I was not going to let her wait until January. So, they told me that if I called the secretary of the specialist I may be able to bring the appointment date forward.

Still feeling slightly fobbed off, we left the hospital. But, on phoning the secretary I discovered that she was considered such an emergency that she would get to see the Dr within the next 7 days. A lifeline, something to give us hope at last.

So hope is my word of the week. When everything looks totally bleak the only thing you can do is hope for improvement. Sometimes to have to fight your way through, but it’s hope that keeps you going.

Raisie Bay – Word of the Week

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If You Fell Down Yesterday, Stand Up Today.

by Anne Sweet 11 Comments

photo courtesy of Les Anderson

If you read my post last week, Let Me Not Beg for the Stilling of my Pain, then you would have probably noticed that I was not as upbeat as I usually am. I try my hardest to be positive but sometimes, even while trying, I feel pretty bad inside.

I was really ill, I’d been ill for weeks and I really thought it was time to just give up. But giving up is not really in my vocabulary.

Last week I spent every day in hospital as an outpatient. I received my IVIG treatment for the third time. The first time I’d had very little result, the second time I’d had some good signs but the side effects nearly killed me. This time I was scared about the side effects and had little faith in the treatment. I also harbour guilt for taking such an expensive medication when it was not doing me any good, but talking to other patients they all said I needed to keep going as it does get better.

So, last Monday I had fallen. I had fallen hard and didn’t have much hope in getting back up again.

But, I did. I had my treatment, I have had very minimal side effects, and I feel much better!

Okay, it’s not been a miracle cure, but I have less pain (I have to say that again, I have less pain!!) and I have a little more energy. I feel better inside and my positivity has returned. I’m standing up again. (Almost literally but only for short periods,) and it feels good. I have already been booked in for my next two treatments but I will see my consultant before then. Depending on how long I feel better for he may change my treatment dates.

I have a lot to look forward to this year, and although it started pretty rough, I now have lots of hope that things are going to be just fine.

Word of the Week – Hope

by Anne Sweet 7 Comments

There has definitely been a hint of Spring in the air this week. It’s been warmer and lighter and I’m hoping the weather continues over the Easter Holidays.

Star broke up from school on Wednesday lunchtime and it was her last day in her current school. When she goes back at the end of April it will be into a brand new building. I’m hoping she’ll get on okay with the changes.
The other two break up at lunch time today, let the holiday begin.

I’ve not been so good this week, when you get sick on top of a chronic illness it’s never a good combination. I’ve had a few early nights this week to try and compensate. I’ve also had to go out a couple of times which I really didn’t want to do, but some appointments can’t be missed. I’m hoping that I will feel much better over the next couple of weeks while the kids are at home.

One of those appointments was to see a new nurse for Star and we came away filled with hope that she will be able to help her with some of her issues. The bad news is that it’s going to be a long and tricky road to recovery but at least we can see that there is hope of things getting better for her.

I also have an appointment with my consultant at the rare diseases hospital (it’s brand new!) coming up, and I’m hoping that he will agree to me having IVIG treatment which I’ve heard is really good. I could even be pain free for a couple of weeks, now that’s something I always hope for.

We have some exciting things planned for Easter. We will be doing lots of Easter Baking, including biscuits, cake and the kids are hoping to make their own Easter Eggs (well we have chocolate bunny moulds!) Then we have a day out planned at a National Trust site for their Egg Hunt. We hope to have another day out coming up too, but that’s a surprise for now.

I’m also hoping for a little home improvement during the holiday, I’m still waiting for our family bathroom to be decorated and the new cabinets put in.

So what are you hoping for over Easter and how has your week been?

My Sunday Photo – 22nd January

by Anne Sweet 18 Comments

I have to admit I have a love of trees, They always look beautiful to me whether they are barren in winter, laden with snow, covered with blossom or simply green and wonderful. These trees are outside my kids school and it’s a view I see regularly, although not so much now that my husband drives to pick the kids up.

Last Friday we were waiting outside for them and I just loved the way the low sun was shining through these familiar trees, like a sign of hope and blessing of better things to come. It seems like the days are over too quickly right now, with sun setting soon after the kids are home, but on Friday it also seemed that the sun was low all day. I’m not a hater of winter, but I do think that getting sunlight in your life is important and grey and dismal days fail to bring hope.

The trees at the bottom of my garden were covered in frost and hidden in the fog this morning. They still held a certain mystery and attraction for me. The other day there seemed to be a bit of a battle going on between the pigeons and magpies amongst their branches, Even in their bare state they are still full of life and activity. At night we have owls that serenade us and in the summer we get bats flying around at sunset.

I really do love trees.

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