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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Horrific month 

Not updated this in a long time oops. Well Christmas was lovely with my wonderful kids. But I was gradually feeling worse and worse. My liver function results are poor so put it down to that but felt so poorly and was falling asleep at 6pm. Sometimes even before then. I went to the doctors and as usual they blame everything on the fact I have autoimmune disease and the fatigue that comes with it. I was attempting to do more hours at work but was really struggling. And was honestly really depressed. I didn’t have any life. There was no life to enjoy. I was so physically exhausted and ill every minute of every day. I wouldn’t wish it upon my worst enemy. I went through a stage of waking up at 4am and suffered horrific headaches every minute of the day. Finally I was due to be on a first aid course at work one morning. I woke up at 4 as normal and went downstairs and took my meds as usual and waited for them to kick in. They didn’t kick in and I just got worse and worse. Honestly… I was terrified. And for someone who is ill constantly says something. I ended up collapsing and was in and out of consciousness. Luckily as it was early morning Rob was home and had to call and ambulance. I was losing feeling in my body and having convulsions and just had no control over anything. So don’t really remember anything of the ambulance. 

A&e were fab and got me onto a ward very quickly. Saw a doctor who said I needed a CT scan and it would be that day and I don’t need to stay in. But it kept happening and there was a lot of crying that day. It came in waves like an attack and even IV morphine wasn’t helping. Eventually it started becoming clear I wasn’t going home. And I got moved to another ward. The next day I was utterly fed up despite the wonderful staff. I asked to discharge myself as they weren’t controlling the symptoms so it seems silly me being there. Rob and the kids were visiting and I was all packed up and certain I was leaving with them. One night was more than enough. So a doctor came to see me and finally explained that part of my brain was deprived of oxygen. Not exactly news I wanted to hear. But in a way it was a relief that they found something wrong and I might not spend the rest of my life like this. 

So settled in for another night and invested in the TV next to my bed. £10 a day!!!!! 

These two visiting cheered me up.

So the next morning time for another scan and found out then it was a blood clot but was starting to break up. So needed treatment to break it up entirely and could come home with yet more treatment. Also had some scans on my spine and turns out the arthritis has spread to my spine and is causing pressure in my brain causing one migraine after another. In turn causing large brain clots. As much as autoimmune disease sucks this is the first time it has caused something really serious. 

So I came home and honestly things weren’t much better and I was really depressed. I went back to work and barely made it through a 3 hour shift I felt that weak and my head hurt that much. My neurologist recommended looking into acupuncture so I did and discovered daith piercings. I wasn’t convinced but at breaking point where I had nothing to lose. So I tried it. 

Oh my God……..

I had a headache when I went in which the piercer said was good and it hurt like hell which kind of distracted me from the headache. And the headache miraculously went. I didn’t want to believe it had helped really. I still get a bit of a headache on the side that wasn’t pierced so going to get that side done too. 

I have spoken to the doctors and they aren’t convinced it will continue to work. Just because the cause of the migraines will always cause the pressure in my brain so that has to cause something I guess. So we will wait and see. 

In other news finley is doing great. Taking more every day. Still hard to understand but he is trying more words now and he still loves school. Very proud. 

Jess is struggling although had a good day today which is amazing. She is really struggling with her anxiety but is going through a lot and saw everything when we got the ambulance. I just hope we get more good days. I have more energy to do things with her now at least. 

I did try to find ways to have more of a life. I seem to have lost some friends recently and as someone who has been unpopular and disliked my entire life it sucks. I looked into becoming involved with amateur theatre again and I really want to and have found the perfect place but I just don’t think I have time which I an gutted about. Rehearsals are the same nights as jess’s gymnastics training. At first I thought we will just have to find a way. But it’s not fair as finley would be up until 9 so it isn’t an option. I am absolutely gutted. I guess I could look into going back to rock choir as an alternative. I need to decide. I need something for me. 

Ooh I have a wig now but think my hair is growing back which is exciting. I have just bought some new headscarves though. I have got the wig for work as actual find it a bit weird to wear when everyone knows I have no hair. I am really hoping it doesn’t fall out as really got my hopes up now. 

The wig!!!

My hair growing back with no bald patches yay. 

Am now half way through my first year at uni and it’s been hard. I picked social science as it looked really interesting but I have never done anything to do with it before so it’s been really hard. I haven’t done as well as I would like with my last essay so working hard to try and make that up this time. 

OK so I think I have written more than enough now. Sorry if I bored anyone why made it this far ha. 

Back home :-)

Am back home and honestly am relieved. I had a fabulous time and am incredibly lucky to have wonderful children who were a pleasure to be with but….

I am exhausted. It’s hard to get my head around the fact I am 34 (well 35 in a few hours) yet a weekend away means a week to recover. My ankles are twice the size they should be, my wrists are swollen, my head is spinning and am dizzy, have fallen asleep once and am about to go to bed. At 8pm!!!!

My 8 year old is staying up later than me.

My consultant on Friday did say the fatigue can be the hardest thing to handle and get used to. He said due to the inflammation levels in my body me being awake for a day takes the same effort as a normal person staying awake for 3 days. Not even thinking about what my night shifts do to me ha.
Well my diet went ok. Wasn’t out of control and did no binge eating so really happy with that. But just want to see a loss at some point. No chance this week but maybe next week. Just need to move on from my meltdown last week. Already told rob I don’t want a cake tomorrow. Going to make myself a slimming world one. There is no way I am getting on my trampoline any time soon as just standing is hurting.

Urgh this is a miserable one. Just rubbish finding a lovely weekend away takes so much out of me.

Looked into joining rock choir earlier. Just something for me. But could only attend every other week with work and….it’s £25 a month. £25!!!!!!! Bit harsh to sing a little. Might keep thinking ha. Need a hobby, obviously nothing physical. I still want to do St John’s ambulance volunteer. Just concerned I would receive more first aid than I actually give ha.

Hmm think this might be referred to as over thinking. And this is why I need a blog……. X