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. 

Eek I am bald 

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. 

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. 

No drugs 

​OK well I have drugs obviously but my first subject this week is the programme where a doctor is trying to get patients to give up medication. OK so I get that it works in certain circumstances and has in one on the programme. But for people like me he just tries to shame you. He even called someone’s medication cupboard the ‘cupboard of shame’. I get his point and given my circumstances I am probably very over sensitive about it. But as someone who probably shared his opinion a few years ago I have learnt the hard way that sometimes incredibly strong drugs are the only option. I have to take drugs that are incredibly harmful just to try and have some quality of life. I remember it shocked me when I first started on the chemo drug. When the pharmacy count it out they are only allowed to be exposed to it for a certain amount of time. And I was swallowing them!! Even the fact that some of my drugs are called biologics!! 

I have had many people tell me that if I go vegan, gluten free etc then I will be cured. Well actually….no I won’t. I have an intolerance to dairy but nothing else. And anyone who claims to have been cured should contact the medical journals immediately given that this is incurable. Even remission for us isn’t like the remission more well known for cancer. With cancer it means you are cancer free and after so long you are no longer a cancer sufferer and your risks decease. For us it means the meds are doing their job. But a relapse is inevitable and you still have to live with the side effects of the horrific meds that keep you in remission. And not forgetting any of the disabilities that the illness has already caused. Currently I have no hope of remission. I just wish sometimes autoimmune disease recieved more awareness. I constantly get the ‘ooh you’re too young for arthritis’ or the ‘ooh I have it in my little finger from when I broke it so I know how you feel’. No……you really don’t ha. 

So for a few reasons I had to wear an oxygen and heart monitor over night last week. This was not a fun night. It fit on my wrist then the sensor went on my finger. Did I mention I sleep with my head on my wrist ha. And it kept my wrist and finger completely straight all night which left me in agony the next day. On the plus side I looked like ET which was fun. 

Still awaiting the results.

Feeling very organised at the minute. I have two elves which santa has already sent for elf on the shelf hidden in our room. And ordered the kids Halloween outfits today. We have bumblebee from transformers and poison ivy.

I attend uni for the first time on Saturday and am very excited to meet my tutor and others on the course. I am studying through open uni so I only need to go a few times a year. I just aren’t sure what time they finish and once I start work the times might clash but I hope not.

I have really struggled with illness this week. I have an ear, throat and gland infection so have been really lazy and the diet has frankly gone tits up. But tomorrow I am determined to loads up on painkillers and get my house tidied. Then Thursday it’s a uni day. I can’t go swimming until next week until the infections have cleared up. I went for my last swimming lesson for the time being though and wow it was hardcore. The instructor said that my swimming was great now and am feeling a lot more confident so he did it as a personal training session. Who knew swimming could be so hard ha. So am doing interval training now. Doing 2 lengths as sprints and then a break. Am excited to get back as starting to really enjoy it and feeling like I am actually working hard and getting some fitness back. 

I do have an appointment with my favourite doctor on Thursday though about changing pain meds. I think sometimes Rob forgets how much pain I am in as believe it or not I never moan about it. I just try to get on with things as life doesn’t stop. But it stopped Sunday night. I just sat and cried for two hours as the pain was just relentless. I think it was a wake up call for me and Rob I guess as I just try and push through it and sometimes it is just too much. 

The kids helped with my injection today. All in preparation for flu jabs on the 8th. Most children can have the nasal vaccine and I feel like utter rubbish that my kids have to have the jabs. But the nasal must is a live vaccine and I simply can’t be around it. My best friend has even offered to keep her daughter away from me when she has hers but I should be protected by then. So today finley pressed the button on the injection pen and jess put the cotton wool on and did the plaster. They really are awesome. 

Ooh saw a comiccon in Keighley today in March. Only £5 each so really not expecting much ha. But my little geeks are incredibly excited. Despite me not starting the job yet I will need to book that off. It’s rare I am well enough for days out now so am determined and will use my mobility scooter and not give a damn. 

Anyway time to stop wittering for this week. If you got to this point then we’ll done! 🙂 

Need to sleep 

So I changed a lot of drugs 3 months ago as I was struggling to lose weight. Am over the moon as I have lost 27lbs but have pretty much not slept in 3 months. I am exhausted. So ringing the docs tomorrow. In fairness haven’t spoken to them in about 2 months which makes a change. I go through phases when am constantly speaking to them and I feel like an utter pain. 

I often go on support groups online to speak to other people going through this but even that is frustrating sometimes. I think sometimes people don’t realise there are different severities of this, or any other disease. So whilst changing to a vegan diet and taking probiotics may help coincide with someone with a mild form of the disease going into remission sadly fixing this is not that easy. It astounds me that people think if I cut out gluten I would get better. Wow, so the NHS are happy to pay £1000’s giving me toxic and dangerous treatments when I could have just cut out gluten. And going for a daily jog on my twisted joints will definitely keep me out of my wheelchair ha. 

Sometimes I deal with this better than others. I have had a rubbish week. Pain has been terrible and just generally felt ill all the time. But life goes on. Didn’t really sleep at all on Thursday night. And then did the lethal thing and fell back asleep at 6.30. Rob tried to wake me up many times and frankly got ignored ha. I finally got up at 8 giving me a whole 30 mins to get me and the kids ready. And given how much pain I am in I don’t move fast ha. So had a 30 second shower. Screamed at the kids several times to find glasses and brush teeth. Dropped a slice of cucumber whilst I was making the kids lunches and cried. I can’t be certain but…….I think I over reacted a little bit. So hurriedly got the kids ready after I grieved for the slice of cucumber that the dog ate. No curtains had been opened so had them stood next to the door in lovely summer uniforms, rain coats in hands and I picked the dog up to take out after school run and………yep there was some kind of monsoon. So dog hated me as she was left at home and kids got wet. Then got to school and looked at jess and realised she had one trainer sock and one normal sock. Had pretty much given up on life at that point so she had to roll one down ha. Also realised she had summer shoes on and they had holes in. So mum of the year goes to……..not me. 

For the record the dog did go out. I just needed to be more prepared and find my rain cost and change my shoes. I aren’t that mean. 

We also had another parenting fail on Tuesday. Jess’s glasses completely missing. Bearing in mind my kids take after me and are pretty much blind she ended up in school all day with no glasses. After I spent 3 hours searching Rob finally admitted he left them at her gymnastics class the night before. So after thinking about consulting a divorce lawyer he added that he would go and pick them up after work. And this is why I love my best friend Kelly. She got the moan on the morning school run that they were missing then I updated her on the night run and added that Rob then announced he would be late home going to get them. Her instant reaction….I would rather get them myself later. Rob sees it that he will make that sacrifice and add to his journey by going to get them. A mum sees it that he has had a full day at work and now gets extra time driving. See to us mums that is time off ha. As it turns out he wasn’t really late home so divorce lawyers weren’t needed. 

I am still waiting to start the new job. Still awaiting references and police checks. I can’t wait. It will do me so much good to get out of the house sometimes. I am also trying to think of a ‘hobby’. But it’s really hard. I tried rock choir but didn’t really enjoy it and was always feeling rubbish so made excuses not to go. It wasn’t very disabled friendly. I couldn’t always stand up to sing but certain members would not give up their front row seats for anyone so I just had to sit and look at the person stood in front of me and I couldn’t see the choir leader. So trying to find a hobby isn’t fun. So yet again poor kelly has been roped in. Our only suggestion at the minute is a painting class. Not told her quite how unartistic I am. It’s the only subject I ever failed at school. Would love to be able to draw but I simply can’t so this could be a disaster ha. 

So all my medications have been moved to the bedroom. 2 years ago I had literally only ever had the odd course of antibiotics. They have been on a shelf and in random bags in the kitchen and we had a spare cupboard in the bedroom. So this is how it looks……..

It’s insane how many medications and injections I have and…….I still feel rubbish and am always in pain. I did try an experiment at tge beginning of the year and just stopped all my meds. Essentially I had a tantrum and decided they didn’t work so what was the point. Yeah it appears they do work and I pretty much left myself bed bound. So I won’t be having that tantrum again ha. Lesson learnt. 

Things have improved with Finley at school. Had a meeting on Monday with his teachers and SEN leader. And it was good. New ideas being put in place and he seems to be settling in well now.

And jess is jess ha. She has settled into year 5 fine. Can’t believe in 2 years she will be in high school.

So I will stop waffling on now. Need to get motivated as got a swimming lesson at 4 that I really can’t be bothered going to. But it’s the last one. And he has really helped my swimming which is great. 

So that’s all. 

5am urgh

So seen as I have little else to do at 5am I thought I should update this. I have been a little slack. Yet again. 


We are struggling to settle finley in at school so all my energy and worry has been on that this week. And he started football lessons last night which he loved. He is growing up into a smart, loving and incredibly funny little boy and it’s so frustrating that I want the world to see that but all they see is an unsociable non verbal child. Hopefully one day things will improve.

Jess is doing well back at school and has quit all her other hobbies in favour of the one that her life revolves around. Gymnastics. I think this may be karma for the dance shows and competitions I forced my parents through as a child as I am going to be a ‘gymnastics mum’ ha. Her face lights up when she is doing it though so I love to watch her. And I know I am biased but even her coaches said she is naturally talented. 

Now onto me. Am waiting to start the new job. As it’s in a care home I need references and police check back before I start. Am still really excited. Also officially started my degree now which is great. So all that is good. 

Also had my first appointment with the surgeon about having a gastric bypass. I have decided to go ahead. My health is just so rubbish that I want control over something. I have never ever been slim and this would mean hopefully within a year of the surgery I would be a normal weight. Which at the minute just feels like a dream. I am doing well with my diet though. This is the best I have done in so long. It helped hugely that my husband has done it as well. That support really helped. 


Health is pretty much the same. Now do most of my treatments at home which is good. A lot better than trecking to the hospital. Have considered changing hospitals but I really like my consultant and don’t want to leave him. Had picked a hospital near my inlaws so they could look after finley while I was there. Obviously I don’t need childcare while he is at school. But think I may just stick with the long drive for now. Still on the dmard injections (chemo drug). On the maximum dose and the disease is still spreading. My wrists and elbows are getting hit the hardest at the minute. So now waiting to add a biologic drug. The nurses did an ace job with blood taking this week…..


Generally just feeling tired all the time and my back is really sore and the only place I am comfortable is on the bed. Sometimes I feel like poor Rob gets home from work and I go straight upstairs. I need to suggest he comes up and watches a film with me up there. Need new sofas really. Ours were only cheap and are about 8 years old now. But just not in a position to spend money on them at the minute. In fairness need a new bed as well. Maybe after Christmas we could put my wage to one side every month. Until then santa needs all our spare money ha. 

My mood is so much better than it was. After a really low time I feel like I hit rock bottom and am on the way back up again. For those who know me well the friend who has caused me nothing but hassle has finally gone. He decided after I have been a good friend to him for 8 years that he doesn’t like me and can’t force himself to be friends with me. At first I was really upset, then it struck me he has done this many times before and will probably be back. And then struck me that I think I will be happier if he doesn’t come back. He is my worst critic and one of those people I hate who believe they can say what they think if it’s the truth no matter who it hurts. Why do people think their opinions are that important that people want to hear it. It’s my pet hate. It really is. I can’t stand the whole attitude of ‘I say what I think with no regard for anyone else’. I remember reading a rant a comedian Jason manford wrote about the same thing. And it was absolutely spot on. If someone says ‘I always say what I think’ to me I don’t see honesty. I see arrogancy and ignorance. So yeah…..he has gone ha. 

But I think it’s what I need. I am so lucky and happy with my current friends. Also just reconnected with a beat friend as well. We drifted apart down to a few things but saw each other Tuesday and it was great. We slipped back to how we were and I realised how much I missed her. She is away now for 12 weeks but I am convinced we will get back on track once she is home. I have always struggled with friends and it’s amazing to be at the point where I have a best friend and a handful of close friends. Kelly and Sarah have particularly dragged me through the last year and will always be grateful to them both and hope I am a good friend back. 

Ooh am also learning to swim again. It’s painful but it’s literally the only exercise I can do so I am determined to do it. I have my waterproof mp3 player so just lose myself in my music and try to get through it. My technique is improving. Had to cancel my second lesson thanks to my 9 month old car breaking. Now have a hire car so will be at my swimming lesson tomorrow yay. I aren’t convinced I am actually going any faster but think I am enjoying it more now. I will always miss the gym and dancing but needs must and I refuse to not exercise. 

Anyway I should really shut up. I now have finley downstairs with me too so am being subjected to rescue bots on Netflix while I have a dog and cat fighting over who is sitting on my knee.

Ooh last thing. My puppy is all grown up and is now off lead at the park. Makes walks on crutches a pleasure now ha. 


Right promise I will shut up now. This is a sure sign I have cheered up ha ha. 

Got a job!!

Over the moon. Screw you immune system ha. It’s the one I saw a while back. Just 2 x 3 hour shifts on a weekend on the reception of a care home. Really didn’t think I had got it after the interview as there were a lot of applications but they said I was the best one yay. And instead of just being on reception I have the opportunity to do other work to assist the manager so am very happy. So waiting for police check and references and then I can start yay. 

So feel like things are finally looking up. Start my degree on Wednesday too. 

Ooh and had my first swimming lesson. Even talked the instructor into giving me badges ha. I have my second one tomorrow. Already improved loads from the first one. And now I have my swimming mp3 player it is a lot easier to enjoy swimming now. I can just get lost in my music. 

Health wise isn’t great though. Inflammation is increasing again and I feel rubbish and pain is pretty bad again. 

And I am terrified about finley starting school on Tuesday. It’s just such a long time to have no communication with anyone. He goes on Monday to see his classroom so I can talk to his teacher then. 

And I think that’s everything for now.