Crash and burn

After a few weeks of better health and growing hope, I caught flu and a chest infection and now.. Well now I am in a major crash and flare. 

It started with a cold, then a virus then full blown flu and chest infection. I hoped hoped hoped it wouldn’t erase all the good my body had been showing recently, but was very sadly wrong. 

I no longer have flu or a chest infection, but I am back to where I was a year ago, in bed, unable to move without pain, cramp, spasms. My body is in constant throbbing ache and my muscles are pulling and burning. 

My brain confusion is at a high, I can’t read or take in conversations properly, I can’t understand what someone is saying, as though they are speaking a foriegn language. 

I can’t sit up without support and my electric blanket for more than ten minutes.

My head constantly aches, my left eye is blind and I had to for the first time ever miss a hospital appointment because I wasn’t well enough to get there. 

It’s all so depressing, frustrating, sad, annoying, maddening. 

I had hoped I’d never get to this point again, that painfully trying to move about holding in the scream of the pain of just moving, and being defeated by my stairs was something that was becoming easier. 

Now, I really don’t know how long this relapse is going to last and I know I have a long hard battle ahead of me again to get on an even keel again. 

The fun of flares and crashes are the constant painsomnia comes back, the not being able to swallow properly. The muscle cramps are a constant companion and my left arm keeps losing feeling on me. 

But, I’d rather lose the feeling than it being in cramp. 

I just feel fed up at the moment, depressed and face the huge steps back into better health that will once again need to be taken. And I wonder, knowing what is ahead, can I really do it all again.

I would rather not of had the better health for awhile, because it’s so much harder to adjust back into this complete bed and home bound state. 

I’ll get through it, because I have to. Because I had enough stubbornness to push and make myself as well as possible. 

It’s just the thought of living like this 24/7 for the next however long is a horrible and frightening prospect. 

One of the worst things is the guilt that I again can’t run the home as I usually do. That my son is going to have to pick up the reins as well as working. My Mother has said she’s going to come do my housework, but she has enough on her own plate and ill health and I can’t allow it. I know my son won’t mind, but I do. My Father has offered to help too which I may have to accept. 

It’s taken me a few days to write this and I’m not even sure I’ll post it. It’s not my usual happy, fighting blog post. But maybe that’s not a bad thing. This blog was started to show the harsh realities of the conditions I life with, and I’d be lying to everyone if I didn’t say things are very difficult at the moment. 

Just keep swimming

Which has been my motto this week as my body has been a bit up and down symptom wise.

I am having terrible pain in my lower back which means I cant sit up without my electric blanket over cushions so the heat can help soothe the pain. I has been slowly creeping in the last few weeks and has started to be daily accompanied by the hugging sensation in my chest.
My left side is still seizing and unseizing, from a few minutes to hours to days. I find it difficult to swallow when my neck is frozen, it feels as though there is something large and flat stuck in the left side of my throat, which there obviously isn’t.
The pain has upped again too, causing my limbs to shake and spasm and the lightening like striking has decided to travel from my head, down my shoulder blades and into my spine.

I really have no idea what my body is doing or why it is doing it. I do know that I am becoming increasingly annoyed by it and also slightly worried I am going to lose the use of the top half of my body as the seizing and freezing of my limbs are happening every day, and now travelling into my right arm and side.

I don’t usually worry about my aches and pains, but I won’t lie to you or myself that I am concerned I will wake up one day and not be able to move my body at all.

It used to take me half hour to be able to start getting out of bed in the mornings, which is slowly beginning to become longer and longer time wise, up to an hour for me to be able to move properly to get out of bed.
It’s a head scratcher for sure, one which I hope will go away before I have to phone the doctor for more diazapam.

On the plus side..

My partner put together my triple wardrobe and all my clothes are organised which is a brilliant help for me. Bless him, he spent the weekend doing it, even though he went into work early Saturday morning and he has a very demanding job. It was very difficult to put together, flat packs are the worse type of furniture!
But my bedroom now looks better than it ever has, and I have wooden blinds put on at the beginning of November which will be another item that will make my symptoms easier. My windows are over 8ft long, so you can imagine how much light it creates.But the blinds will keep the room dark and the nasty sun away. My light sensitivity has become worse, so the blinds will help so much.

My bedroom is my heaven and hell, but with these new improvements it will be more heaven 🙂

Hearing and seeing the world enjoy the weather

Hmmm, well this post may be a lil different than usual but I need to get it off my chest and know that most people with chronic condition/s will understand.

Summer is upon us. Here in England it has been scorching for a couple of weeks. All I have heard and seen via social media, outside and from talking with people how hot it is and how they love/hate it. There’s a huge diversity between the love and hate, yet they have no choice but to go out in it.

This is the first summer I have been fully unwell and housebound, and I am finding it a bit difficult.
I want to be outside in the sun, not directly in it but to go to the harbour side, sit outside a pub, meet family, friends go out with them and enjoy the long days and get a lil tan. But obviously it’s no longer an option and I have to say I am sick of hearing how others are doing all I want to yet complaining about it.

Does that sound harsh? Yes, maybe but it’s true. It’s not so bad in the winter, no one is out, there are no fetes in the park across the road, none of your friends meeting to sit watching the boats, world go by, no music festivals in the park, no outside unless you’re hurrying to a destination to get inside into the warm. But this total isolation indoors has been very difficult for me, and I didn’t expect it to be.

I’ve never liked the heat and was always complaining about the scorching weather, having to be here, there, everywhere in it all the time.
Now I wish I had the option. I wish I could complain about it, be searing hot, but be outside none the less. For the first time in many months the urge to walk, be outside has been overwhelming and I have felt myself become down about the whole thing, despite my usual resilience to unhappy thoughts and feelings.
It’s really difficult to see people via pictures, statuses not only enjoying themselves but their lives. To be at the beach, the park . Even just walking, something that is becoming more impossible for me to do. I want to feel the sun on my skin, my body as I walk, i want to be able to go out by myself and not have someone push me.. To be alone and sit and watch the world go by as I used to. To sit under a tree and read a book as I used to. To go anywhere alone, to be free and feel the freedom of walking.

I have been very unwell for the last week, and at times I haven’t been aware of what time, day it was just getting up to take my meds, eat and gratefully fall back into a fitful but mostly pain free sleep. I have welcomed sleep this week, it isn’t as painful as being awake, moving, trying to think clearly which I haven’t been able to do much of.

I woke yesterday with the clearest head I have had in a couple of weeks and felt I was turning a corner. For a few hours I didn’t feel the exhaustion of my body, the pain was bearable and I felt optimistic. Then by 1pm it kicked in again, the mind numbing, body paining every cm of my body feeling as though I was slowly but surely crumbling from the inside out. I took all the pain, muscle meds I allow myself in the afternoon and gladly crawled into bed and shut my eyes, happy to shut everything out and fall into blissful, undemanding sleep until the evening.

I am very pleased that my head is clearer, even if my body is still being annoying.
It’s very difficult to talk about how crappy I am feeling about the inability to go out. I don’t want to make my nearest and dearest feeling bad or defensive that they have the option. It’s not that at all. I’m glad they can go out, I wouldn’t want anyone to feel as though they couldn’t in case it upset me. It doesn’t upset me at all. It’s my own inability that is making me feel crappy about it, that I feel very isolated and as though I haven’t adjusted to the summer as well as I thought I would.

I am very surprised at how I feel, I thought I was past all that. The being mostly housebound was something I had accepted. And it is, but the recent weeks of sun and only being able to watch others being out in it, or told about it has been very difficult for me. And knowing that this is probably how it’s going to be for the rest of my life, the non summer activities, is something I am going to need to accept. And I have no doubt I will, but everything takes time and by next summer I will have hopefully adjusted.