4 months of sulking!!

Yep that essentially describes the last 4 months. I think I am doing better now. I went through a really difficult time accepting my life as it is now. A really hard time. You forget for a second and when you remember it hits you like a brick every time. Everyone who knows me knows that I often have stupid ideas. Most of them I never see through but my poor friends often hear them. Some examples are burlesque dancing, netball, rock climbing, ice skating. I have never been through with any of these ha. The hard part is I still get my stupid ideas and I now can’t go through with them even if I wanted to. My stupid idea part of my brain hasn’t caught up with my broken body. The worst thing is I do have some ideas that are disabled appropriate and I still don’t do them ha. I think I have been focusing too much on what I can’t do instead of what I can.

I do have a good life. I am happily married (most of the time ha), I have two absolutely amazing kids and I also have brilliant friends. But sometimes its hard to remember that when I feel like I have the flu every single day.

I still love my electric wheelchair. It really has been life changing. I am so incredibly grateful that Motability let me change my car early to get a wheelchair hoist but the car has been delayed. It was ordered in June and not even built yet. They have promised me the next 5/6 weeks seen as I told them Rob works with Motability and knows people ha ha. Once I get that I finally have my independence yay. At the moment I rely on other people to get the wheelchair in and out of the car so can’t really go anywhere alone. Plus the car has all hand controls. I drove for a long time yesterday taking a friend home and it was just too much. I came home crying and had to go straight to bed.

So the kids are back at school. I am enjoying the rest time but also miss them. They are both doing great but still have their problems. Finley broke my heart one day when he told me he is different at school because nobody understands him. He does amazingly well though and he has friends and generally seem happy at school. He is still incredibly behind and we will probably introduce one to one help at school next year but I want him to concentrate on relationships and having fun at the minute. Jess is doing a lot better too. The anxiety and other issues are still a huge part of her life but she is working hard to help herself and is doing a lot better. She finds break times overwhelming at school and has permission to stay inside. She has been trying to go out though and really proud of her. This morning she told me she is staying in now but last year she wouldn’t have even tried. She also has a residential in 10 days which terrifies me. Her teacher is fab though and is the same teacher she had last year. She has put her in a room with her best friends and has put herself in the room next door to help her. So am about to have 3 very anxious days waiting for phone calls. Her teacher is going to keep in touch though thankfully.

So trying to think of any news. We were mean to be going camping this weekend but its been delayed due to the terrible weather. We agreed from the beginning that we are fair weather campers ha. Especially with me needing to use the wheelchair. Found some lovely sites for next year too. Ooh exciting plans for next year too. We are having a party for our 10th wedding anniversary. It will be our chance to have a good night after a disastrous wedding. For those who don’t know I will tell you the wedding story. Here goes…..

It was booked for the 6th December and all was going well until the 1st October. The hotel rang and said that they were going bankrupt and closing. We were either going to lose our money or could get married on the 11th October. Obviously we had to take the new date as couldn’t afford to lose the money. So had 10 days to move an entire wedding plus my bridesmaid and page boy couldn’t come as they were on holiday and Rob’s usher and his wife were away so we were gutted people were going to be missing. But somehow we pulled it all together. I had to work the night before the wedding as I couldn’t get it off and came home and said bye to Rob who was going to stay at his mums and cried. At the time I didn’t have many friends. Because of that I didn’t have a hen night. But the friend who was meant to be with me the night before the wedding is the friend who was away. I felt so alone. It was horrible. I was so grateful to the best man’s girlfriend who I didn’t even know that well at the time. She helped me rearrange everything and stepped in as bridesmaid. As a make up artist she also ended up doing everyone’s make up. She also did the unthinkable whilst my hair was being done and changed an explosive nappy as Jess was little at the time. So at this point it was all good. The actual service was lovely and I became Mrs Dodsworth with no real drama. The service was in an old chapel in the hotel grounds which was lovely. We then went over to the hotel for the reception. Again everything was going fine and then the fire alarm went off. It was silenced quickly and then the manager came over and told me it was a false alarm. Huge relief. The someone ran out of the kitchen screaming ‘Fire, get out!’. Ace!!

So we are all stood outside in the freezing cold while not one, but two fire crews are inside in breathing apparatus fighting the actual full blown fire. The…umm head fire person, not sure what they are called, told me they weren’t sure if they would have to condemn the building but they would do the best to get us back in. Credit to them that some time later they did get us back in. But the kitchen and some bedrooms were destroyed and the whole place reeked of smoke and petrol as the fire brigade used petrol fans to try and get rid of the smoke. And the party never really got going after that. Then I had an 18 month old child that no one helped with. So even in my wedding dress I was on nappy changing duty and left the wedding party to get her to sleep in her pushchair at one point. Then our wedding night was spent in the honeymoon suite with her asleep in between us. Very romantic ha. So as much as I am very happily married I really did miss out on a wedding day and feeling like a princess.

So the kids are older, I have amazing friends and am really excited about having the party. But yet again it hit me that I will be in my wheelchair. I was looking at dresses and the one I initially looked at would not look good in a wheelchair so it definitely changes things. Such as there will be no first dance ha ha. But it gives me something to be really excited about. And I need that so badly. It has also motivated me to get back to losing weight as well as I am piling it on from comfort eating. So I am doing weight watchers and also going to overeaters anonymous as thought it was time to accept I do have problems with food. So far I am finding it really helpful.

So last thing I should address really is my health. It’s awful ha. I seem to be going downhill rapidly. I am exhausted constantly. It genuinely feels like I have flu every day. I just want to be in bed. But obviously that isn’t an option. Rob is doing so much extra and I feel bad that sometimes it feels like I barely see him. He comes home and I go to bed. Its the only place I am comfortable. I can get a reclining chair through occupational therapy but currently have no where to fit one. I am struggling really badly with the methotrexate for my psoriatic arthritis. It isn’t helping anyway. I have swelling and pain literally everywhere. So I just don’t see the point in continuing. Same with the gabapentin for fibromyalgia. Although I find it difficult to work out which one is which to be honest. Am due my MRI soon as well to check for more brain lesions leading to a possible MS diagnosis. Basically my immune system hates me. I have a lot of dizziness and eye sight problems which terrifies me because of driving. Obviously if I am ever affected I never drive. Sometimes though I just think its the fatigue as its like my eyes are really tired. I am getting a lot of problems with trembling. And losing feeling completely in my joints or them just giving way for no reason. So yeah its tough. Not just painful joints sadly.

Anyway I have wittered on enough. I will start updating more again. It does me good to get everything out of my system. Had some free time finally today because sat waiting for Virgin as have no home phone line which is a pain as my care line is connected to it to contact the falls team if I need them. So obviously can’t go out as it needs fixing.

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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. 

Bad day

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.