Changes

The last month plus has been a roller coaster of extreme downs and ups.

I’ve been quiet and keeping to myself most of the time because of this.

Health wise I’ve been working incredibly hard on trying to walk more, rest, pushing myself, pacing.

A few months ago I said about being able to read a bit and then had a complete reading block.
Well, I made myself read a tiny bit everyday, and write the it as I was going to try to make it stick in my head. Months and especially the last two weeks have paid off and I am now able to read much more which I am delighted about.

Yes it causes massive headaches, eye sight strain and sometimes frustration because I do forget things very easily. But, I am sticking with it and it is working! As a former book worm it’s so satisfying to be able to read pages instead of paragraphs, and I hope to eventually read as I used to 🙂

Along with the reading I have been building up my strength by walking everyday, no matter how bad my conditions are. Around the flat and taking my rubbish to the end of my landing Shute instead of the one next to me. Well, through this forcing I was able to get to my shop! Across the road! With my stick, and stopping so many times, and retching along the way but I made it! I have a noticeable limo nowadays, caused by my hip and back issues, I’m the pirate of my area 😉 but even with a limp I’m more upright than I was 😀

I was in bed for a few days after, and I find this happens if I walk/push too much. I walk to the Shute and need to rest for the rest if the day. Or walk around the house and need to, and the cramps, leg locking, numbness is still happening. But, it’s a massive achievement to me. Even if I can just get around the flat and to the shop once every few weeks and I’m in my chair for everything else, I feel this is enough at the moment.

I won’t skirt around the issue of being extremely down recently too. I have things going on in my personal life that have been really difficult, and juggling this, my appointments, bills, pushing myself, isolation, friends disappearing, painsomnia, trying to sort home improvements, trying to cope with my health issues.. It has kinda felt a bit much to deal with.

I don’t often get like this, usually I’m on an even keel and bat away problems as efficiently as I can.

I guess the last two years of bad health and all that it has entailed has caught up with me. But I am feeling better than I was and trying to stay on track with everything.

It’s difficult and I don’t like to feel as though I can’t face some days, but I’m aware of this and because I’m aware I can work on it.

I’ll get to my better place eventually 🙂

Downstairs

Yesterday I completed a task I had set myself, to sit in the living room for an hour. I was and am still ridiculously pleased I managed to do this as I not only sat and shared a very good hour chatting with my son and watching wrestling, I managed to get down the stairs of death! Ok, that may be a bit over exgageratted but they are a big obstacle for me and one I battle with daily. I never thought of them that way when I moved in, I was 17 and full of energy and although they were steep it never crossed my mind that one day I would have to battle daily with them. They are the main reason I know I am going to have to move home sooner rather than later. Plus the fact I know I need to live in a single story home which will greatly improve my ability to get around and have no fear of falling down as I have on several occassions. It will be hard to move, I have been here 16 years, I brought my son up here, it’s full of memories and happiness. And although the area isn’t great, I’ve always been able to come home, shut my door and have total privacy from the outside, something I relish. But moving at the moment is something I can’t even think about clearly until I am slightly better, the stress and energy needed is just going to make things escalate. So for now it’s a thought that is there in my head but not in process at the moment.

Being able to sit downstairs, plumped up with my orpthopedic cushion and sofa cushions was lovely though. The pain cut in within twenty minutes, and by the time the hour was up I was in a lot of pain and spasming but could no longer feel my legs, until I was helped off the sofa then the pain cut in. Boy did it cut in! But I am determined to spend up to an hour on better days sitting downstairs as it can get very isolating being on your own in bed most of the day. And I want to spend time with my son, talking, watching a programme or just sat together doing our own thing but still im present.I love my peace and time alone and I think that has really helped with my being mostly bed and housebound. It has made the process easier than some one who needs to be around people a lot. I have never been like that, from a young age I spent alot of time alone and enjoyed it. But I do get days when cabin fever sets in and I yearn to be outside, to do simple things such as going to the shops or sitting in the park with a book and feeling the sun on my skin. I haven’t been able to go out in my wheelchair as I haven’t been well enough to, the last trip made me relapse for days.

It’s not until something is taken from you that you realise how important it was to you. My choice of going out when I want, as far as I want and for as long as I want is no longer an option. I can manage an hour tops in my wheelchair then I need to get home before my limbs totally freeze and pain doubles me over. But on the flip side I am getting used to being at home. There is a sense of drifting through the days and them all rolling into one that is in a strange way very peaceful. I have no deadlines, no having to rush from one place to another at a set time, no huge demands put upon me. I spent my whole life living that way, even from school age we are put on deadlines, play times, work, meal times. Its all time set. My specialist said that it is a very odd fact but people who end up having chronic conditions are the usually people who have always been busy, worked hard, had high stress and daily demands. Its as though we are at high alert stage and instead of the body calming down relaxing, resting after a flu, event, life style calms down, chronic illness has kicked in and kept us and our bodies at high alert and they are stuck there. I found that a very good way of describing chronic illness, and do so when someone asks about it.

I am not saying I wouldn’t stop being this way and live as I used to if I had a choice. I would swap in an instant. But when you become house bound I think you have to accept that you are going to be living like this for a while, or for ever depending on your illness. Acceptance I feel makes it easier to live this way. I accept I am living this way at the moment. I am hoping things will change in the future, but for now and the near future I know this is my world, my home and it is easier to face when you accept it. Acceptance is the key, and the key to not driving you made being at home day after day, week after week, month after month, year after year. I know I can’t change my situation at the moment so I am choosing to embrace it and if things get better that’s great. But if they don’t, well, I think my acceptance will make my life living constantly inside at home a whole lot easier to handle.