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.