I decided to start writing as my life has been a bit messy lately. I have a chronic health condition that has deteriorated 3 months ago leaving me off work sick, trying to manage my pain levels, dealing with crippling fatigue and trying to salvage some normality for my life.
I currently feel like a disabled person, which has never been an overwhelming feeling for me. I have changed from spreading out tasks and activities over the week to manage my energy levels, to having to think about the very smallest things in case I can’t manage them.
I took my 20 month old nephew out for a few hours yesterday for the first time. We went to the Sunderland winter gardens and museum. It was great! He is so much fun and got so excited when he saw a “man” (the bust of someone at the museum entrance) a ship model in a glass case, a lion that he could show me his eyes, nose and feet. He ran around in a state of sheer joy, over the moon to be able to watch buses out of the windows, but he saved his top level of excitement for the fish. The museum has a large koi fish pond with huge fish that swim up to the edges of the pond. Jacob was thrilled watching them and we sat for longer than I expected with him smiling at me and pointing at the fish repeating the word fish over and over. We then went for lunch at The Place, a cafe close by where we had fish cakes and beans, Jacob, and a lamb wrap, me. After that we drove back to my sister’s house in Durham.
Sounds like a great day, perfectly normal and uneventful…in my life I had to get up 2 hours before I needed to pick my nephew up to give me enough time to get dressed, make up, hair done, breakfast eaten and have a rest after I’d done all of this. Before the day even started I had to think about what we would be doing, is it close to drive to? (I can’t drive further than about 20-30 mins away due to pains in my knees, legs, arms and fingers) When we’re there what will we be doing? (I figured we could walk around he museum, he walks slowly, like me, so not too bad, then sitting for lunch, all manageable as long as I’m having a good day. Bad day and I can barely walk, so it’s lunch or cinema only) Can I park nearby? (Again with the walking problems, I managed to borrow a parking spot from a friend so I could be closer) How long will we be? (I can’t be out late, or do anything for more than a couple of hours or I get too tired)
This is how my life revolves at the minute. I am able to do some things some times. I can’t go dancing or swimming which I used to enjoy. I am struggling to work, which I also enjoy, but is also vital to my life. I can’t fit in my friends and family and everything is a huge effort. I am trying to not feel sorry for myself, give up or loose faith, so I am trying to do everything I can to help myself.
I currently attend a fatige clinic, and see a physio for a Pilates exercise class every Monday, to help build my core muscles to reduce pain and increase mobility. An occupational therapist every 2 weeks to help me manage my life and increase my hours at work, and my consultant every month to check on medication and make sure everything is working correctly together. I also see my GP every 2 weeks to reasses my hours at work as well as increasing pain medication to manage the pain as it seems to be increasing as I do more. I have also recently cut sugar and gluten out of my diet, I haven’t drink alcohol or caffeine for a couple of years now, and heard and read that sugar and gluten can have a negative affect on pain and energy levels. I am willing to try anything to see if it helps.
I have been feeling slightly better the last 2 weeks. I’m feeling as if my energy levels are increasing a bit, and my pain hasn’t increased as much as it did the first couple of weeks that I started back at work. This is a great thing!! However, I am currently sitting on the sofa with my arms, legs, shoulders and fingers hurting whilst watching TV as I was told to do something everyday, so after taking Jacob out then meeting friends for dinner last night and having the worst nights sleep in weeks, I am exhausted!! I have food that I have pre cooked and heat packs and a cat for cuddles. That is it! If you have heard of the spoon theory, I am out of spoons. If you haven’t, then I am done. I have no more energy left and I cannot have a bath, cook anything different for tea, do some ironing that I was thinking of doing. For the rest of the day I will be sitting/lying on the sofa, occasionally getting up for more tea or the toilet. I am unable to do anything else, and it is this lack of control that frustrates the life out of me.
I hate that I can’t do anything to help myself, I hate that I have no control over my own body and that there is no reason why my condition has got worse. I hate that I have to change my life and think about things are aren’t even an issue for most other people. I am angry that his has happened to me, I am furious that I can’t work and support myself, I am frustrated that I have been trying to claim PIP since April and I still haven’t been accepted. I am angry that I forget things and completing forms exhausts me so I have only just applied for a blue badge. I am annoyed that I need one at all and have to go through such a rigmarole to get one. I hate that my pain levels are still not under control 3 months after this has all started deteriorating. I am frustrated that I have to ask people for help, that I have to limit activities with family and friends, that I think I need a walking stick, that I feel like a disabled person and it makes people treat me differently. I am terrified that this is my life, I have no kids or a partner and I am scared that I won’t ever be able to have this. I am furious when people tell me it’s a good thing I don’t have kids to look after or that would be worse! It wouldn’t!! It would mean that my life was how I wanted it to be and less unusual and as bizarre as it currently is. I never thought I’d have to deal with this but I do. I don’t want to have to deal with it, but I do. I don’t want to give in, so I won’t.