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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Been a while oops

Honestly I was really good after the last blog. Quite upbeat. But the last few weeks have been terrible and I am struggling to stay upbeat. The inflammation on my si joints are causing my mobility to deteriorate very quickly. And on top of that the fatigue has been horrendous. To the point that I have been scared with how terrible I have felt. Especially because I know my liver isn’t functioning properly. I have just felt like I am missing out on life and had lots of tears over the last two weeks. I have been working a lot as well which probably hasn’t helped but when I say a lot I mean maybe 20 hours a week. Which two years ago would have been a breeze. 

I think my lowest moment was not being able to stay awake with the kids. It was 4.30 and Rob was due home at 5.30 and I was conscious of what was going on around me so they were perfectly safe but I just couldn’t function. Obviously once Rob came home I could go to bed and sleep and I slept all the way until the morning. 

It’s so hard to explain fatigue to someone who isn’t ill. It’s like your body shuts down. You want to do things but your body won’t physically let you. I have constantly felt at the point of collapse. 

So yeah…..the last two weeks haven’t been good. 

I thought I had got over the depression of my life being stolen by this horrendous disease but it appears not. Thankfully since Friday the fatigue has lifted a little. The pain and my mobility is just as bad but I can cope with that. Life is painful but at least I can stay awake and function. 

And my head is all over the place about the gastric bypass. Am so scared how my body will cope and also if the first few weeks will just make me more depressed than ever with recovery from surgery on top of everything else. So am giving slimming world one last ditch attempt. Last time I went I was on so many drugs with weight gain as a side effect and nothing I did was good enough. I just couldn’t lose weight. So very nervous at first week weigh in. Lost 9.5lbs. Over the moon. So at least something has gone right this week ha. 

The kids are great. Although jess has been getting stressed at school again. I think that is just her being ready for the Christmas break though. So happy to have them home for the next few weeks. No school run stress and hopefully lots of fun. 

Also forced myself to start reading again which I am hoping will help me mood. I guess everyone needs a little escapism. 

We restuffed all the sofa cushions yesterday to try and help me sit down there. I am constantly laid on the bed as it’s the only place I can get comfortable. The last thing we need to do is make the sofa higher so I can get on and off easier. But all the raisers you can buy won’t fit our sofa which is typical. So there might be a phone call made to my dad soon ha. But am hopeful what we have done will mean I can spend more time sat down there. 

I still have no hair. I keep thinking it is growing back but then the bald spots appear. I am so bored of people asking me if it’s a choice. Complete strangers. What a rude question. I don’t want to have to tell strangers it’s a combination of autoimmune disease and chemo drugs. It’s none of their business. 

OK my last thing is I am excited about Christmas. All the presents are bought. We just need to wrap. I am working Christmas eve and Christmas day so need to be more organised this year. I don’t mind working though as it’s only 3 hours so hardly missing out on anything. So am feeling the Christmas spirit yay. 

Hmm wonder what this blog might be about…..

OK so anyone who is friends with me knows my hair will be in this so let’s get it out of the way ha.

Over the last two weeks I have unexpectedly lost over half of my hair. I am surprisingly OK with it. I think all the other symptoms and side effects make me feel so poorly that this one is actually bearable. Obviously it has done wonders for my confidence ha. Thank you to kelly who yet again has been a great friend and has endured head scarf shopping and been forced to look at a ridiculous amounts of photos of hats, scarves and bald spots. So I don’t think anyone will see my hair for a while. Hopefully it will grow back again but if not I have so many hats etc that I am well equipped ha. I am currently sat with a colour remover on the hair that’s left so I can send it back natural. I can not be bothered keeping up with my roots on hair that no one sees ha. 

So this is me in a scarf…..

So my next subject is my little finley d. He has always been such a sweet loving child. Yeah….not any more. He is so moody at the minute. I think he is learning from the best. His horrible pre teen sister with the attitude from hell. But he had a hospital appointment the other week and it seems we have finally got to the bottom of his poo problems (excuse the pun) and it seems his muscles are working properly to hold the poo in hence he constantly has dirty pants and doesn’t even know as he doesn’t feel it. Poor little dude. So we are trying out different ways of helping him with pull ups, incontinence pads etc. The only way of fixing it is surgery but not guaranteed to work and they wouldn’t like to even consider it at this age. 

Just had them both home for a week holiday and really enjoyed it. Rob had 3 days off and we even managed to do stuff. 

Blackpool was a small nightmare in the wheelchair. Most of the drop curbs aren’t actually dropped. So I nearly got tipped out of the wheelchair 100 times which was fun ha. But other than that it was a good day. I just had yet another love hate relationship with my wheelchair. 


I have made a wonderful discovery while I have been ill and that is that fatigue isn’t being tired. It’s actually a world of hell that I am in most days. Maybe I just don’t have the energy to care about my hair ha. So I uses trusty Google and found a list of symptoms for fatigue associated with autoimmune disease. 

  • muscular pain, joint pain and severe headaches
  • poor short-term memory and concentration, and difficulty organising thoughts and finding the right words (“brain fog”)
  • painful lymph nodes (small glands of the immune system)
  • stomach pain and other problems similar to irritable bowel syndrome, such as bloating, constipationdiarrhoea and nausea
  • sore throat 
  • sleeping problems, such as insomnia and feeling that sleep isn’t refreshing
  • sensitivity or intolerance to light, loud noise, alcohol and certain foods
  • psychological difficulties, such as depression, irritability and panic attacks
  • less common symptoms, such as dizziness, excess sweating, balance problems and difficulty controlling body temperature


In case you are wondering all these are a joy to live with. I think two in particular make Rob and the kids want to kill me. One being sensitivity to loud noises. I am constantly turning the TV or radio down so no one can hear it. Second one is inability to control temperature. Everyone else might be sat shivering and I am sat in from of a fan or the opposite way around. Rob actually puts his coat on to get in the car as despite the fact we are a few days away from November the air con is still on in my car and there are no signs of me wanting to increase the temperature in there. It is currently about the same as a fridge and just how I like it. 

Ooh one good thing. I did my first uni assignment yay. Not got a mark yet and already behind with the next one but am proud anyway ha. 

Ooh am nearly ready to start my new job. In fact officially start a week today yay. Done two days training and then going in Wednesday and Thursday to work on reception with someone else to learn the ropes then am set free ha. Still so excited about going back to work. I need it so much. 

So I think that’s everything I have to report. I am quite cheerful though which is good. I struggle to stay positive on my most ill days but think I am having more fun and laughing more. Went to white rose last night with kelly last night and was so much fun and a huge amount of laughter. I definitely need to do more fun things. So am done. I am sure I will be back to fill everyone in on how the new job goes eek.