So for a little while I was doing OK. Even managing to not use crutches for a bit then bang!! My horrible immune system decided to let me know who is boss. My joints are visibly inflamed. Walking is incredibly difficult and painful, I need help with the most basic of tasks and I feel horrific and honestly if it wasn’t for being a mum I would probably stay in bed every day. Both my liver and kidney functions are impaired so feeling rubbish.
And then I have turned into someone who ‘has a fall’. Pretty much most days. So applied for a disability grant for a stair lift. Which is a process where loads of different professionals write reports saying I am pretty much useless and can’t do anything for myself. And then they have also recommended I have an assessment for a carer and other alterations in the house to make it more disabled friendly.
And then have decided I hate my mobility scooter and the stigma associated with them. So going to sell that and get an electric wheelchair. Plus it would serve me better now. Initially the idea with the scooter was that I could walk short distances. Those distances are becoming shorter and shorter so me getting out of the wheelchair is now becoming less likely. Me using the wheelchair in the house is becoming more likely now so access is also on the list of things to sort out.
And then my last moan is having to quit my job. I couldn’t go on Sunday and honestly shouldn’t have gone the last few weeks but am stubborn. I feel too ill to be stubborn anymore so I had to admit I simply can’t do it. I have no energy for anything. I haven’t been going swimming and am stupidly behind with my degree.
So my priority next week is the degree. Apart from the kids I literally have nothing else to take up my time now. So apart from sleeping while they are at school I don’t have much else to do. So I really need to get motivated and do it. I think swimming is a no though as I simply can’t deal with the pain of getting ready afterwards. So thinking of trying some kind of yoga at home. But need to find something I can do.
So this is possibly the most negative blog ever. Hence it’s been so long between them.
So on a positive. Kids are great. And the one great thing to come out of leaving work is that I have really missed them on a weekend. I am determined to drag myself out of bed and into the wheelchair so we can go places on a weekend.
So that’s a brief summary of the last few months. So I don’t have to tell everyone separately. I have a bit of a habit of being unsociable at the minute so people might need to kick me into action if they want to see me ha.
I try every day just to get on with things but just spent the last 40 mins sobbing in my husbands arms. I have had enough and it’s not fair. I have had a hard weekend. We had shopping to do Saturday afternoon in Bradford so admitted I needed my nemesis….the mobility scooter. We live in one the the hilliest (is that a word) city in the UK which is also renowned for cobbles. It’s a nightmare to a disabled person. To start with the brand new shopping centre has a car park with speed bumps inbetween the disabled spaces and the entrance. It’s just the right size so the mobility scooter bottoms out on it and makes a hideous scraping noise in an car park that echoes so draws even more attention to me. Finally got out of the car park and got into the shopping centre where people walk in front of me like I don’t exist. Left the shopping centre with its lovely smooth surfaces to go to the uniform shop for new book bags for the kids. This was up a hill, with cobbles that are uneven. I constantly felt like it was going to tip over. We managed to get there and I mentioned we needed to go to a shop at the bottom of town. My poor unsuspecting husband suggested we walk. This led to an argument and me driving around Bradford on my mobility scooter crying cos I was scared of trying to negotiate more pavements and more cobbles. Bless him, obviously he didn’t realise how hard it would be to me and we ended up driving. So that trauma was over. Sunday was just a busy day as the kids had a swimming lesson and we had dog training. It was the first class the puppy went to and typically she was by far the worst behaved puppy and I felt rubbish and just wanted to leave the whole time. Finally after this hour from hell I finally got to rest for a bit.
Me and my husband constantly have the same arguments. I want to do everything and am a bit of a control freak and just simply can’t. He says if I need help to ask but I wish he would just see that something needs doing and do it. And not just do it but to my standard. I know I sound awful. I sound like such a bitch. But we constantly argue about it. And then I ask for something doing and he forgets so I have to ask again and end up nagging. This happened again tonight.
But I should add I have been really down all day. Pain levels have been high and the inflammation has now spread to my hips. I feel like I am taking drugs that make my life hell. Initially it seems like a waste of time. But they could also be slowing down the disease. Plus if I don’t do through the crap of taking them then I can’t know if they will improve my life.
My stomach is also very bad at the minute. They have run some tests and waiting for more but they suspect crohns or colitis. My skin is also giving me a lot of hassle. The psoriasis on my scalp is really sore. And then I have inverse psoriasis ‘down below’. That is probably the worst thing at the minute. I can’t even sit down. It hurts so badly. It was that which prompted the breakdown tonight. I have an appointment tomorrow to discuss it thank God. I couldn’t comfortably put some of the cream on my bottom myself due to restricted movement in my shoulders so sometimes my husband has to help. It’s soooooooooo romantic. Not surprised it boosted my confidence so much ha. But he started putting the cream on and the pain was just searing. The best way I can describe it is that it looks and feels like a burn. I was just screaming and sobbing in pain. But at least it fixed our argument as he ended up cuddling me and I soaked his t-shirt in tears.
So today isn’t a good day.
I rejoined slimming world on Friday and had a bit of a binge earlier and really pissed off with myself. Really let myself down. I have until Friday to try and make it up.
It’s my birthday Wednesday, and honestly I couldn’t care less. Doing nothing on the day and told Rob I don’t want presents. On Friday we are having a nice meal at home and then going to the cinema with the kids on Sunday. We always go out for meals for birthdays but for both kids birthdays they were a nightmare for me as I felt so ill. So I have said I want to stay in for mine. Am honestly happy to let it pass with no mention of it. Sadly the last year is not one I want to celebrate. The only good thing is I have learnt who are true friends.
So that’s about it. A really negative blog so o apologise to anybody who reads it. Luckily there aren’t many that do ha. I just need to get it all out of my system.
Tomorrow is a new day.