We went to legoland discovery yesterday and despite my husband discovering how heavy my new wheelchair is it was a huge success yay. OK…..so there were a few minor crashes at first while I got used to the controls. There was none of the stigma of a mobility scooter and I was independent and could go where I was woo hoo. Only downside is the kids constantly trying to get me to suddenly recover and get out of it so they can play. So they were delinquents in the car park racing around with it on full speed while I sat in the car and Rob lost the will to live while chasing the kids. I also had many times of panic when the wheelchair seemed to be struggling. It wasn’t known to me that jess was riding along on her heelys behind it to drag her along. And the battery was awesome and hardly went down all day which was a huge relief. And it didn’t feel like it was going to tip over like the mobility scooter does. So for once I am happy ha.
Starting to enjoy not working. Just because we can do things on a weekend. And also it’s nice not having that pressure that I have to be well enough. In fact I slept through when I would be at work on Saturday as I had taken jess to gymnastics but hardly slept the night before. My sleep is terrible at the minute. Just due to pain. The painkillers I used to be on my body has become immune to. I have some for neuropathy which is a major problem at the minute but honestly aren’t keen on taking them due to the side effects. Mainly weight gain. But then I am pretty immobile at the minute and struggling. So got an appointment on Wednesday to discuss the pain. My last two appointments were with a registrar who looked like she wanted to cry when she looked at my notes ha. So I thought I should be good this time and see a doctor who knows me. The doctor I saw last week also didn’t know how to spell psoriatic which didn’t fill me with confidence when I have psoriatic arthritis.
But she was very good with jess who also had an appointment. She needs to have blood tests which is causing her huge distress. Frankly I could tell her I am sending her to be executed and she would react better. I have never done anything to make them afraid of needles and they often come to my 7000 blood tests and I never react and they both enjoy stabbing me with my own injections. Again….another way of them not being afraid. But no, I think jess would rather run away than go for this blood test. It’s my worst fear, to check her for arthritis. There is no denying that despite the fact I am the first person in the family to have an autoimmune disease it is hereditary. I don’t think she will have it yet. I think she just pushes herself so hard at gymnastics that she is picking up regular injuries. But to get her to go to this blood test I have promised she can have a new doll and if she does have arthritis she will get pretty crutches and can have an electric wheelchair. So she is now sold on the idea. Nothing like bribing your children. Sadly finley is the one who actually shows more signs of arthritis but has had blood tests and no inflammation yet thank God. I can’t help but feel guilty but I thought my health was fine when I had both kids. We had a few months from hell when finley was two and I was diagnosed and he was diagnosed with special needs within 3 months. That was not a good time.
When you have worked since 16 the thought you might not be fit enough to work is scary. I have never been on benefits and didn’t even know how to. I was lucky with my disability application that it went through straight away. Although we are thinking of contacting them to change the car. I have become so much more disabled I need some more adaptations really. Which sucks. But I know how lucky I am that the government provide this. I see people in the support groups online from other countries who have it so much harder than we do.
Anyway have whittered on enough. As you can tell I am in a better place than the last blog. So bye 👋
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.
I know it has been a huge time since I last updated so sorry. I normally use my phone but I had so much to write and its rare I ever get near the laptop. So finally sat down ready to update. My daughter is at school, hence why I have the laptop and my son is happily watching ben 10.
So my last update was about my assessment for PIP. I was so scared as it is life changing receiving that money. I kept ringing to ask if a decision had been made and eventually I got an answer 2 weeks after the assessment. I received enhanced on both. I just sat and cried with relief. No more money worries and I don’t have to worry about working for a bit. I feel like the new year is going to be a fresh start.
Literally the day we found out I had got it we also found out the car my husband bought had been badly damaged in an accident and needed returning to where we had bought it. So we returned it and now that I am entitled to a mobility car we decided to manage with one car for a few weeks. We did it for 2 weeks and it was tough. Very hard for everyone. We were getting up early to take Jessica to breakfast club then me and Finley would spend over an hour in the car. Then on a night the kids had an hour at home after school then another hour in the car to pick Rob up. Finley kept falling asleep in the car too which was a nightmare as he has a sleep disorder and needs routine so he was getting more and more tired. Thankfully my inlaws have offered us their car for a week so we have a week of normality and fingers crossed my new car might be here this week.
I have picked a Ford B max. It is the right height for me getting in, is automatic and has an adaptation to the steering wheel to help when my hands are bad. I have never even driven a brand new car so can’t believe I am getting one.
I am still getting good and bad days. Yesterday was a good one. Am trying to cut down on my pain relief as I aren’t convinced it is helping anymore. Joy of opiates is that you get immune to them. My mood is definitely better. Not sure if that is a combination of money worries being alleviated or the tablets I am on. They help me sleep on a night so I aren’t as sleep deprived anymore. We got back pay for the PIP as well so have bought a mobility scooter. Only arrived yesterday so only been tried in the house but I can’t wait. It means I can take the kids to the park without my husband. Its something we rarely did this summer and it isn’t fair on them. Also got a bag for the back that will hold my crutches so if I can’t take the scooter into a shop I can use my crutches. It will be safer for the general public as well as when Rob is pushing my wheelchair people near by are lucky if their ankles aren’t a victim of his poor wheelchair driving skills.
Made a start on christmas shopping. I can’t wait. My first christmas where I haven’t worked in 8 years. I don’t think Finley has been old enough to notice I worked, but Jessica certainly has and is really attached to me being at home for now. So that is definitely the plan for the foreseeable future. For an 8 year old she has a lot on her mind. I know she is worried about me, Finley has special needs and communication problems and normally his frustrations are aimed at her and then she is having problems at school. She is very sensitive and gets upset easily. Sadly some of the other kids in her class have figured that out and aren’t very nice to her. I am working with the school though to try and build her confidence a bit.
So thats everything, good news for once ha.
Thank you for reading, especially seen as it is so long this time ha.
But quite a lot to report. Am in the new bedroom and loving it. Life is so much easier. Although I seem to be spending more time than ever in bed. Bought a chromecast for the TV in the bedroom which has been amazing. But I am sleeping a lot. Way more than before. Not feeling great either.
Consultants most recent letter now states confirmed diagnosis of psoriatic arthritis but also fibromyalgia and Ankylosing Spondylitis. I feel like I am falling apart. The application is now in for disability and a wonderful friend paid for a lawyer to help me. Also have a medical coming up for a Blue Badge. After being turned down initially I contacted the local mp who over turned it and now have an independent medical. Also have a made to measure wheelchair coming in the next two weeks.
Also in my second month of sick leave. Handed in second sick note on Thursday. Don’t feel missed at all by my manager and she advised she is advertising my position temporarily. I miss my colleagues a huge amount though and am glad they all keep in touch to remind me they miss me. I appreciate it.
Today we caught up with friends which was great after not seeing them since before I became sick. We all used to be really close but lives have just drifted apart. Honestly it was humiliating. I couldn’t even stand without my crutches and Rob had to help me with everything. Including putting my shoes on. And the whole time I was tired and dizzy. Being this ill certainly doesn’t give you much of a social life. I only seem to really have two friends who I still enjoy spending time with. Friends who I talk to about other things. Not just this. The other week someone made me feel crap, just questioning everything. How I will cope with stairs, school runs, driving etc etc I DON’T KNOW SO STOP QUESTIONING ME LIKE I AM MAKING THIS UP. All I can do is take one day at a time and battle every hurdle when it happens. I never asked for this.
A friend took to to ikea last weekend and I strapped ankles up and because it was a good day I managed with no crutches. I was in agony but I managed. He wasn’t happy that I left them in the car but it felt good. I felt normal. In excruciating agony but normal. Might not try it again though ha.
Any other trip is in the wheelchair. Looking at ways to make it easier. Discovered power strollers so it’s on my wish list. It powers the wheelchair but you still steer yourself. Looks like a good compromise as can’t afford electric yet and have to jump through 7000 hoops to get one paid for.
I did use the mobility scooter in morrisons today. It was awesome. Makes me annoyed I have been stubborn and not bothered before as shopping was a pleasure and quick without my struggling with my crutches. Got a little card to show anytime I want to use one.
Ooh we went to legoland in Manchester the other week. Because I was in the wheelchair we got queue jump which the kids absolutely loved.
Have started painting my nails seen ad worked in healthcare for so long I haven’t been able to do it. I am really bad at it but getting better ha. But today when I laid my hand out I noticed my little finger is twisting. My little toes have done the same. The doctors said they will but still not nice to face it happening.
Anyway time to get back to watching TV in bed, my favourite past time now.
After several tantrums it is finally here. First one arrived which was the ex demo one I bought. It was the wrong size which made me want to cry!! Actually I did. I was upset as well as I knew it was the only one they had as ex demo and I couldn’t afford one new.
But the company were amazing. They arranged to send a brand new one for no extra money for delivery the next day. So I was very happy until…..
I missed the delivery……came at 3pm when on the school run. So I cried again and was very over dramatic.
Well it finally arrived today and it’s amazing. I can’t believe how excited I am about a wheelchair but I really am. It just gives me some freedom back. I can probably walk around for 2 hours at a push. I miss going to shopping centres and days out with the kids. I am hoping my inflammation will reduce but until then I can do the things I want.
I have decided to pursue applying for disability benefits but am still eager yo work and genuinely love my job. I need you update my manager about health though. Always really anxious that she won’t want me there or lose my job due to health problems. I emailed her Wednesday about going in to see her but not heard anything. I know she is incredibly busy but just feel a little anxious about it. By strapping up my ankles and knees I am getting through my shifts but am struggling. And I want to explain that using the crutches and a wheelchair outside of work doesn’t mean I can’t walk. It means walking is agony.
Saying that my wrists are so swollen and painful today I have barely been able to use the crutches.
Jess goes on her first brownie camp tomorrow. Two full nights away. I am going to find it so hard. But it looks like she will have so much fun.
Ooh and lastly I am going out to a pub that doesn’t serve carvery and have s children’s play area. Was at my friends today and we were trying to talk among the children disturbing us and frankly got no where so decided to go for a drink. Now we have been friends a long time but don’t we have been out drinking since 2006. Obviously I can’t drink and she doesn’t want to but am excited about a couple of hours of catching up with hearing ‘muuuuum’!
So my wheelchair arrives tomorrow and am so excited to be able to have family days out again. I can’t wait for my next consultant appointment on the 24th. Currently have deformities on my feet, ankles, achilles tendons, wrists and fingers. My pain levels are so high. And can only use my crutches so long before my wrists, elbows and shoulders are suffering. I know my doctors want me to sort out disability payments so I need to crack on. I do know that all this just means my chemo will be increased further which I aren’t looking forward to but at least am used to the side effects now and seem to have finally embraced my short hair.
A lot happier after frankly marriage crisis talks. My husband is great but has accepted I need him to get another job that is more flexible and need more help around the house and the last rew days have been great.
I also have motivation to get back on my diet finally. If people need to push me around I need to weigh less ha. So tomorrow morning is weigh in and no more messing around now.