My week in photos (sort of) 8

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So this week. I am having/have had a wobble. A big one. It has surely been one of the hardest weeks I have had to endure in a long time. I have had to go to a medical tribunal and that really tested my nerves and strength. I have also been so very ill, with a very swollen knee and general other ailments that happen when my disease flairs up. It its all consuming and draining and has made me feel quite rubbish. Thank god for friends and family chats to make all seem a little more bearable. I don’t really have much more to add, nor have I felt like taking any photos. Besides I have been in my bed-prison all week unable to walk or move. Onwards and upwards though as they say, next week is a new week and tomorrow a new day.
GOOD THINGS though:
-Rain and grey days
-Soft, warm pyjamas
-Hot water bottles
-Came cuddles
-Whatsap chats
-Downton Abbey. I am literally that bored ha! Also I have become a bit all consumed into the world and it has made me feverish and weird
-Comfort food like things on toast (egg, avocado, baked beans, marmite et- not all at once).

I feel stuck behind a bit at the moment, with projects and with life in general. Hoping my next round of medication improves things somewhat for me and I can start taking back some of that time that has been stolen from me. I have a list that as long as my arm that constantly needs rejigging and just feel like a bit of a failure in general. Until I stop and think that I am fighting on getting better and living with this disease, which is just good enough. I need to lay off on the bad guilt feelings and stop being quite so nasty with myself and just realise that the little battles and effort are good enough. And if my good enough is another ones ok then so be it. I do get angry and want to scream and shout and ask why me? Why did I get chosen to have this bloody vile body eating disease (auto immune means self attacking- my body quite literally HATES me which doesn’t bode well for my self esteem hmmf. Much asked questions like how can I really love my self if my body has chosen to hate me and attack me and eat my bones, vessels and skin?). Then I remember there is just no bloody use in going down that path, it doesn’t help. I hate when those dark thoughts creep in and I just don’t feel good enough for the world. I have to reclaim what is good enough though. Barely there survival. Brushing ones teeth and doing ones hair, being able to tie my own laces and butter my own toast.. and even on the darkest days being able to get to the loo on time. Those things are in the minor success club and those things are good enough. I can’t expect my body to be nicer to me if I am not nicer to me. Minor successes and the good enough club need to be celebrated. I just need to constantly remind myself of that fact.

Tick

A quick entry on time.
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I feel years fall like days. And days fall like years. The expression the days are long but the years are short. How apt I find myself thinking.
Everything around me is in constant flux and change is happening yet I feel I am wading through treacle to move the second hand on the clock just a tiny nudge. Life is on pause while everyone is around me getting married, starting families and going on big grand adventures. Whilst my little old body, aged before its time, sits whilst waiting seeps its way into my bones and eats away at them. The feeling of time rotting away at my insides, thick undergrowth and brambles growing around my bones. Making me feel suffocated and stuck. Making it harder to move from as they root me to this very spot.

The talk of change and future plans seem so distant and in the yonder when only spoken about minutes, hours ago, and then if by magic, suddenly those days turn into weeks that form months and then years.

Big heart wrenching occasions pass with the inevitable goodbyes that tug at the strings of my being, slowly pulling me down and making me miss and feel nostalgic for times that haven’t even happened yet.
Times that are spoken about wistfully, times that are spoken about with the gutsy confidence that comes with talking about very distant things gives you. The giddy excitement of a dream, plans and journeys (physical and mental). All spoken about with hope and joy. But its ok because they won’t happen for a while. There is still time, life still has time to happen, we still have so much time to be. Until the day arrives and its happened. And you are in the exact same situation with all those giddy plans but them still being so far out of reach. Hands flailing to catch at them, if you could just run that bit faster. But you can never run fast enough. You can always run a bit more tomorrow, until tomorrow and the day after and the day after that and so on have passed. Groundhog day. Energy rationed out like medicine. One bit today and the rest for another day.
Trapped by those seconds, minutes, hours, days months and years. All of that waiting and that never being. Its all so bittersweet. Trying your very damn hardest to enjoy it whilst it is here, this present. Thinking this could be the moment, this could be it. Although it never feels like it.
Trapped by that waking thought that life is exactly the same as when you last left it. Only the hands on the clock have been around way faster and many many times, there are new faces that look back at your older face. You awake and realise that you are 10 years older and wonder how you have slept walked through it all. Wading through thick syrupy time, eyes open but not really there. How did it happen? So you cling and grab onto little strings that hold you up, grasping at them. Clutching at any flicker of hope of excitement, that there is always some sort of plan waiting in the wings. Living on other peoples time and lives, watching through tired eyes. Happy to be there along for the ride but sad that its never really you. Happy that the ones you love so dearly are doing this thing called living so well. Happy that they spend their time so wisely.
And you wonder when will it be my second, minute, hour, day, month and year? Maybe tomorrow…

This is a little piece I wrote in 5 minutes hunched over my phone, it is what I felt in that moment (and do still feel). I am OK, despite it seeming quite dramatic. I am ok.