All change — April 19, 2017

All change

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. 

Rubbish weekend — November 29, 2015

Rubbish weekend

So Friday is chemo day so I always know Saturdays are hard but it is completely ruining my weekend. I fell asleep at 9 on Friday night and didn’t when up until 11.30 on Saturday and did the same Saturday night. And I am exhausted again now. Part of me wonders if should move chemo back to during the week so get my weekends back again. I am moody as well. Earlier on Rob told me 4 times something was on the right but my mind couldn’t focus and I got really angry at him.

Ooh found out today I can get a card so that when someone goes to the cinema with me they go free as my carer ha. There is a perk to being friends with me ha.

Only thing I have done this weekend is go to whiterose on Saturday. People’s disregard of disabled parking spaces never fails to amaze me but we managed to park in one. Used my mobility scooter for the first time. It was worth every penny. Can’t wait to use it more. Means I can use it between the shops and park outside and use crutches in the shop. Perfect. Most shops are a nightmare to get a wheelchair round. And can’t wait to go to the park either. Although judging by the weather I might be waiting a while ha.

Diet is still going fine and as cars are sorted can go back to my normal slimming world meeting and be on the social team again which I love. Only thing that concerns me this weekend is not eating enough as slept so much. But have a few days to eat more before weigh in so fingers crossed.

Taking a friend car shopping on Saturday so get to play in my new car ha. I can’t wait. It still seems surreal that I am getting a brand new car. I have never spent more than £600 on a car ha. This one is £16000, slight difference ha. I struggled to not feel guilty getting this. Don’t get me wrong. It isn’t free as you lose part of your disability payments. But it feels like a reward for being disabled ha. But Rob and a friend have put my mind at ease. Also using my back pay to buy Rob a decent car. We have had hell with cars this year so think we deserve a little less stress.

Only a few days until I pick it up eek.

Really need to go swimming but just not excited about coming out into this weather. Been thinking about putting a hot tub in conservatory. OK I understand this is quite elaborate for a terraced house in one of the worst areas in the country to have a hot tub. But it is meant to be amazing for arthritis and I can’t get in and out of the bath at the minute and they are meant to he easier. Something to think about.

Ooh I bought myself a new laptop. So giddy. Bought jess one for Christmas and it was a bargain so decided to treat myself. Need it for Avon, and blog and spend most of my life on my support group now. Only downside is that because it’s the same as jess’s I can’t play with it until Christmas or hers won’t be a surprise. She knows she is getting one but if she uses mine first it won’t feel special. So sadly there will probably be more blogs once I have that ha.

Aww finley made my day earlier. I automatically say love you all the time to the kids. He was walking up the stairs and he said it back. Was over the moon. First time he has said it and in fairness it won’t have sounded like that to many people. So proud of my little man x