Things are tough at the moment. On the plus side the estate agent has been to see the house and is happy with it, we are getting a little more money at the moment so that makes things easier, and Small turns four on Friday.
But… last week I spent more days in bed than out of it and have felt so much guilt at not spending that time with my son. Of course his Dad is right there with him, he is well looked after and always busy, but it doesn’t assuage that guilt. He did spend some time snuggled in bed with me though, watching DVDs, reading stories or just talking.
The GP surgery has announced that my records will be with them on Monday, but I am going to be away all week, staying with my brother who has just had surgery on his broken leg. He adores my son so it will keep his spirits up to have his nephew to stay for a while. I am planning to ring the doctor next week to request an appointment for the week after. I want a referral to the pain clinic and a referral to wheelchair services.
I have been registered now to play in the development league at wheelchair basketball. The first team is playing their opening match of the season this Sunday and I am going to watch. I am still enjoying the basketball, but I have been re-classified from a 3.5 player to a 3 point player as they have noticed I have lost some movement since I started playing a couple of months ago.
I love my family. I love the small circle of family, made up of myself, my husband and our son. I love the wider circle too, as I am very lucky to have a close family who all take care of each other.
I don’t think my mum realised, until recently, how bad my health had got. Then I stayed with her earlier in the year in her farmhouse and she saw how bad it can be. As a result, she phoned me last week to tell me she was coming to visit and bringing my brother. Small was exceedingly excited at the prospect of having his Granny and Uncle come to visit and was counting down the days. When they arrived yesterday, my mum had brought her cleaning supplies with her and proceeded to clean my oven, my kitchen, my bathroom, vacuum through, dust, and do laundry. She knows how much I struggle with housework, and although my husband does some it is not the same as if I was able to do it. I was so grateful, as it is much easier to keep on top of the little jobs when the house has been cleaned through. Of course, while she was busy cleaning we chatted and my brother entertained Harlan, who had a brilliant day. Mum has suggested that she comes up once a month to help with jobs I can’t do, like cleaning the oven or washing windows. Keeping in mind the fact that she travels over a hundred miles to see me, I think this is pretty amazing. I hope that when Harlan is grown up I will be able to help him as much as my family still helps me.
Changing doctors has been…. interesting. I am waiting for my notes to come through so I can get a referral to the pain clinic. In the meantime my old doctor has been fantastic and ensured I have enough medication to see me through.
I don’t know which one, but one of my medications is causing me to be even worse in the heat than normal. I always have trouble regulating temperature but I feel even hotter than normal at the moment. It’s a recent thing so I am wondering if it is the Tramadol.
Later I am off to basketball 🙂 I was struggling with maintaining two hours training a week so I swallowed my (not inconsiderable) pride and spoke to one of the coaches. As a result, last week I did part of the session training with the league players and then went and did some dribbling and shooting drills for the rest of the time. I felt like I made progress in terms of improving my skills, without half killing myself! Hoping for the same result today.
I am hoping to be ‘on the road’ soon with the 2nd hand Quickie GPV wheelchair I bought on eBay. It needs two new front casters and will need new tyres soon but it was a bargain.
This little man has been keeping me busy, taking my mind off the damn ATOS idiots. Plus the tramadol is helping so I start back at wheelchair basketball next Sunday and I am considering going to a Paralympic wheelchair basketball match as the tickets are £15.
I saw my doctor today and told him about the ESA debacle. He was pretty disgusted that I was declared fit for work, but said he had several patients in the same situation, being bounced back and forth between ESA and JSA because no one wants to pay for them. He advised me to appeal and take it to tribunal (already got the forms) and printed out a letter on the spot detailing every medication I am on, the conditions affecting me and stating, in bold type, “def not fit for work, needs bilat elbow crutches and ongoing pain Mx”. If I wasn’t already married, I think I might have proposed to him! He has also advised as to which doctors near the new house are good and suggested I ask for a referral to the pain clinic. I was in there for over 20 minutes, but came out feeling hopeful about the appeal. I am lucky to have a supportive doctor and a husband who will fight my corner.
The new house is great. We will be happy here.
We had a great weekend camping and reconnected as a family.
I was assessed to change from Incapacity Benefit to ESA. They decided to award me 0 points. I cannot make it through the day without help, I can’t even care for my own son or myself on my own, a trip to Tesco often leaves me in tears from pain and fatigue, but apparently I should be at work. I am appealing, and am seeking help from my doctor and a local disability charity. It is affecting my mental health though and I am concerned about the repercussions.
My husband and I took Small to see Ice Age 4 at the cinema today. He’s never sat through a film at the cinema before but he enjoyed it and even stayed in for the ‘scary’ bits, playing on his Nintendo DS for a few minutes if he didn’t want to watch the bad guys! He’s already asking to go again, so next month we will be watching The Lorax as he is a Dr Seuss fan.
My mountain bike and child seat was sold today. We used a few quid of the money to go out for dinner, but it is another piece of my previous life that I have let go of. I suppose it is part of accepting how I am now, plus of course we won’t have a shed at the new house so there would be nowhere under cover to keep it so it made sense to pass it on to a friend who can take her son out on it.
Tomorrow we get the keys for our new house. I am dreading the actual moving as I am a control freak, so letting other people pack is driving me crazy haha. However I am really looking forward to living there and have decided on a lime green and brown colour scheme for downstairs. A lovely friend of mine is coming over to help tomorrow and we’re also picking up our new (to us) dining table and chairs. We will move the kitchen stuff first and ‘camp out’ in the new house on airbeds tomorrow night. Small is very excited at the prospect. I need to take a step back tomorrow, I packed two boxes earlier and it left me in pain so I am concentrating on planning where I want things to go.
On Wednesday I am back at the doctor, not seeing my regular one as he is on leave, but I will be insisting they up the dose of these patches, and double checking what dose of codeine I can take with them.
Signing off for now, hopefully my next update will come from the new house!
Well the BuTrans patches are proving to be useless. No surprise, when I found an opiate conversion chart and he has put me on a dose equivalent to a quarter of the codeine I was taking. On Monday I am booking in to see my regular doctor to get it sorted out. In the meantime I am resisting the urge to just stick all four patches on at once!
I’ve had a great week with my son, we made bath paint from shaving foam and food dye, cooked together and got the bus into the village. It’s only small but there is a library where the patrons don’t mind a slightly over excited child, a shop for buying an ice cream, a couple of charity shops for bargain hunting and a park. In one of the charity shops, Small fell in love with a raincoat and, given recent weather, I was happy to buy it for him.
Monday is moving day. We haven’t packed as we are planning to move one room at a time. Small is with a childminder on Mondays so hopefully we will make a good start then.
Basketball is going great, I’ve been told I have some natural talent for the game and hope to play in league games next year. I’m enjoying aquafit too, especially now I have changed to a Wednesday class and there are a couple of other ‘younger’ women in that class – makes me feel less like the odd one out and we have a bit of banter between us.
My husband is my full time carer and has finally been awarded Carer’s Allowance. Aside from the obvious financial pressure, this dynamic has also affected our relationship and things have been a little strained. We thrashed it all out one evening and as a result he is now going out to our local Astronomy Society so he has time that is just for him, without having to look after myself or our son. Things seem easier already.
My son makes me laugh every day. He will be four in September and I am planning his party. It will have a Mario theme as that is his love at the moment. I’m hoping we will host it in our new house, which we move into next week. It’s all open plan so should be easier for me to get around and also to feel less cut off from the rest of the family while cooking. Plus it has patio doors so Harlan and the dogs will be happy, and laminate flooring which makes cleaning a lot easier. We’re trying to declutter as much as possible and live more simply, because it will mean less housework for me and therefore save energy.
I have been taking codeine for four and a half years now and currently have it prescribed in 15mg tablets so I can dose according to pain levels. However my usage has been creeping up and up but pain not decreasing. Possibly my increased activity levels are not helping, but I don’t feel that I am being unreasonable. I saw a doctor this morning, although unfortunately not my usual GP, who is brilliant. Anyway, this one seemed a little unsure about what to do, but he has started me on 5mcg/hour BuTrans patches. These are sticky patches that are applied to the skin and stay there for 7 days, then replaced with a fresh one. They slow release buprenorphine and seem to be commonly used for chronic pain such as arthritis. If I get on alright with them, the dose will be increased and I should be able to lower my codeine dose. I plan to see my regular doctor for the review.