So tonight I got super teary over something that I don’t even want to discuss because it’s so pointless and I’m not one to share my laundry or ups and downs on Facebook (It solves nothing). So I have decided to look at my long list of possible blog titles and start writing as it helps even when its about a completely different thing.
So welcome to my life as a long term bum/volunteer. It’s both because I’m terrible at balancing and pacing in my life so I do too much of the latter and end up doing a lot of time as the former. As you know I struggle health wise with quite a few different things (mainly all as a result of my bone marrow transplant). I’ve recently changed the way I talk about it and boy has that helped lots. Now instead of replying to the What do you do? question with I can’t work because I was once really sick…. to I volunteer. Boy has that helped set up the conversations that follow it. (I’ve covered this in one of my earlier blog posts.)
However, today I’d love to give you an insight into what living this life is truly like. Pre summer I was doing loads with CLIC Sargent and was on lots of different groups, helped by representing them at things ect… ect… Over this summer I’ve done a bit for Ellen Macarthur Cancer Trust which take children and young people in recovery from cancer sailing. However with my last trip of the summer fast approaching I’m left feeling a little lost…. What will I do when this wraps up (and I’ve recovered from the sailing). The answer right now- I’m not entirely sure. (This is quite a scary thing for me but I know something will slot into place). I guess the unknown of whats next is scary because I don’t plan- because I simply can’t I have maybe 2 weeks in my head at a time- post that its normally waiting to see how long it takes me to recover from x or y… or simply too far off for me to think about. When I make plans and they fall through and its not me cancelling they hit me quite hard because I have to plan more than most to be able to do things… Thinking about pre rest time and post crash time. I don’t know why but takes me a day or so to think clearly about the reasons why things fell through, and why it benefits me in the long run as I can then do x or y instead- I suppose its because for some things that last 4 days I could have 2 weeks either side planned to prepare for it. However, this by no means that sometimes I can’t do things last minute either (I just have to be well first).
The life of someone with chronic fatigue is frustrating and something I wouldn’t wish upon anyone. It’s exhausting planning, preparing and pre-empting how many spoons (units of energy) your going to need. Its frustrating that after a weekend of doing thinks (a normal person wouldn’t think twice about) your so shattered you spend your evening teary over the most pathetic things because your just exhausted… In so many ways and sleep and rest is all you can do for 4 days+ so that when the next event/trip or fun thing on your to do list happens you have enough energy to actually do it. I wouldn’t change doing the things I do- and never want to stop doing things. I just really wish I wouldn’t have the crippling days (or weeks when i really overdo it) of paying for having a bit of fun or just doing something normal.
I’m struggling a bit if I’m honest with this life- well because its more like a half life… only able to do so much before you crash. I recently had a DWP fit for work assessment and it stressed me out so much I made no/ very little plans for about 2 months. I missed out on opportunities I’d normally jump at because my ability to plan like I would normally went out of the window. When it came to the actual assessment the assessor realised in reality not much had changed in the years since I was last assessed. While at the time I was a bit confused because I thought they had (they really hadn’t). You may see me on a good day- Yes sometimes I can jump and dance, sometimes i can walk to the bay- other times walking to the corner of my road is simply too far and getting dressed can take a life time. It can be really tough. Most of the the time I refuse to let on the hard side of it. I’m far too busy looking at life through the positive light and seeing the massive amounts of opportunities I am able to get, the time with friends I’m fortunate to have, the flexibility to rest around the things I want to do.
This ‘LIFESTYLE’ (as it was once described to me) of being on benefits, isn’t fun. It’s really not as glamorous as it looks (yes I have time to go for coffee’s) but the funds don’t really push to nice trips out, or holidays. It doesn’t mean that because I have the time- I have the funds or energy to travel to you and visit. It’s not a blessing to not have to work (yes it has it’s perks) but I would love to use this brain, and my skills to hold down a full time job. I would love to have the energy to do all the things normal people do (including working without fatigue), I’d also love to be able to say wow work was tiring today…. Instead it’s I got driven to lunch and sat for 2 hours now I’m in tears because I’m just too tired *but knowing sleep won’t help*.
Today, it got a bit much and the emotions of being tired and knowing I’ll be resting till monday so I am in Tip-Top form to go sailing got a bit big. I wouldn’t change for the Trust at all (right now it’s all I’ve got to look forward to). I wanted to let you all know- remember when ‘I look well’ or seem ok- one of four things is happening; Ive prepared well and am ok, something weird is happening and I’m having a good patch, am hiding it, or I’m approaching a crash. Please remember even when you don’t see it, doesn’t mean it doesn’t exist.
Thanks for understanding (or trying to)