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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Eek I am baldĀ 

So after weeks of being really fed up with clumps of hair coming out every time I touched it I did this….

Can’t actually believe I am showing everyone this. I shared it on some support groups on Facebook and was overwhelmed with support from other psa people with and without hair. 

Other than losing my hair things are good. I am spending a ridiculous amount of time on degree work. It is way harder than I suspected it would be. I guess because it’s through open uni we don’t get the lectures or anything you get at conventional uni so it’s a lot of reading and online lectures. But I do love it. Especially now the kids are both at school. I would be so bored without it. And now my hair is gone I can start swimming again. I couldn’t go as last time it was coming out in the pool and a swimming cap just ripped it out.

Just changed my pain relief today and it’s so much better. The pain has been really getting me down so really appreciate my doctors changing them as it’s now morphine and a lot of doctors don’t like giving it. I am starting with yet another case of tonsillitis again. 

Desperately trying to get back on my diet. Since it was confirmed I am getting the gastric bypass I have really struggled. I know I won’t be able to eat for much longer ha. So need to get motivated. My new work uniform has helped to motivate me.

And am loving working again. It’s the perfect hours for me. Although have agreed to do a week of full days next month to cover the day time receptionist. Already planned to spend the money on a new bed for me and Rob, ooh the excitement.

Finley is plodding along as usual and being his usual funny self.  He never fails to make me laugh.

We are having some problems with jess who is struggling really badly with anxiety attacks. But between us, her teachers and pastoral care at school she is improving and getting back to her normal self a bit.

And that’s about it. A cheerful positive blog for once ha.