All change

So for a little while I was doing OK. Even managing to not use crutches for a bit then bang!! My horrible immune system decided to let me know who is boss. My joints are visibly inflamed. Walking is incredibly difficult and painful, I need help with the most basic of tasks and I feel horrific and honestly if it wasn’t for being a mum I would probably stay in bed every day. Both my liver and kidney functions are impaired so feeling rubbish. 

And then I have turned into someone who ‘has a fall’. Pretty much most days. So applied for a disability grant for a stair lift. Which is a process where loads of different professionals write reports saying I am pretty much useless and can’t do anything for myself. And then they have also recommended I have an assessment for a carer and other alterations in the house to make it more disabled friendly. 

And then have decided I hate my mobility scooter and the stigma associated with them. So going to sell that and get an electric wheelchair. Plus it would serve me better now. Initially the idea with the scooter was that I could walk short distances. Those distances are becoming shorter and shorter so me getting out of the wheelchair is now becoming less likely. Me using the wheelchair in the house is becoming more likely now so access is also on the list of things to sort out. 

And then my last moan is having to quit my job. I couldn’t go on Sunday and honestly shouldn’t have gone the last few weeks but am stubborn. I feel too ill to be stubborn anymore so I had to admit I simply can’t do it. I have no energy for anything. I haven’t been going swimming and am stupidly behind with my degree. 

So my priority next week is the degree. Apart from the kids I literally have nothing else to take up my time now. So apart from sleeping while they are at school I don’t have much else to do. So I really need to get motivated and do it. I think swimming is a no though as I simply can’t deal with the pain of getting ready afterwards. So thinking of trying some kind of yoga at home. But need to find something I can do. 

So this is possibly the most negative blog ever. Hence it’s been so long between them. 

So on a positive. Kids are great. And the one great thing to come out of leaving work is that I have really missed them on a weekend. I am determined to drag myself out of bed and into the wheelchair so we can go places on a weekend. 

So that’s a brief summary of the last few months. So I don’t have to tell everyone separately. I have a bit of a habit of being unsociable at the minute so people might need to kick me into action if they want to see me ha. 

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. 

The worst few weeks 

So this is a hard post. And I delayed it until it was an appropriate time to talk about the last few weeks. 

I managed to collapse in morrisons which was no fun. And have had to go to hospital for blood transfusions and steroid infusion as my kidneys and liver aren’t working as they should be. They have tried to admit me to hospital but had to refuse as I needed to be at home with the kids so I could free up Rob to be with his family. So it has been really hard. My pain levels are through the roof at the minute so thats a run down of my health. 

On the plus side I have finally been happy using my wheelchair and mobility scooter. Used my wheelchair to go to a local light display with our family and my best friend and her family and honestly had a great time. My wheelchair didn’t make it worse at all. It made it better as I wasnt in agony and miserable. And as I am so weak at the minute it meant I could actually do it. Without the wheelchair I wouldn’t have done. I have been in danger of staying home too much because it’s easy but this really helped to remind me that I can have a good time. 


And then on the Sunday me and Rob went to white rose and I used my scooter and yet again it didn’t ruin my trip. So a lot more positive about actually being able to enjoy myself. 

And then my new job is finally about to start. I am starting my training this week. Had an absolute nightmare getting a reference from my old job. Two months it has taken and eventually had to complain to head office. But it’s finally sorted. So excited to be back in the world of work. Quite excited to be back in an admin role too. Got some nice skirts to wear so looking forward to getting started. I really need to start doing some work on my degree too. These last few weeks have just been non stop. 

My next update is Jess. She is doing good. Had parents evening and after having quite a difficult year last year with her teacher I really like this one. She is doing really well at school and makes me so proud at who she is becoming. 

Then onto Finley. My little fighter. He has settled into school a lot better but I had a harsh week with having to accept the reality of life for Finley. His problems aren’t enough to stop him understanding. He is very aware that he can’t talk like everyone else and he doesn’t think like others. I had an appointment with his paediatrician and it was hard. We were talking about diagnosis. We are no closer to one and he said as at the moment his problems don’t tick the box of one thing we may not get one. He has autism traits, he has specific language impairment, he has some adhd traits and has sleep disorders. They said at the moment they would class him as learning and speech disabilities and I found that really hard to take. He is such a clever funny little boy who is so incredibly affectionate that I find it hard to accept a learning disability. But the doctor was good at helping me understand. She said it isn’t that his iq is lower or that he can’t learn. Just that his brain works differently. And then we went to his football class on Friday and he just seemed to stand out so much for being different. I spoke with his teacher who agreed we can help more as he is in his own world. During the matches he was just running in circles and not even looking at the ball. But bless the teacher then gave him man of the match for effort and I nearly cried. Just so lovely that he is the only ‘different’ child there yet they are so accepting of him. 


Now onto why our last few weeks have been so hard. My wonderful father in law has fought cancer for the last few years more bravely than I can ever imagine anybody could. He has never given in or wallowed in the hand he was dealt. I have always been incredibly lucky to have such a wonderful family as my inlaws. He has always been a great grandfather and without him I wouldn’t have my wonderful husband. Rob has so many personality traits of his dad and so many similar physical attributes. This wonderful brave man lost his fight. And it really was a fight. 

We love you George and will miss you always xx 

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. 

I am a student eek!

My text books and first assignment arrived. Am nervous as obviously a long time since I studied properly and never at degree level but am excited for the new start. Still need to sort out starting my voluntary work as well. Just been pretty hectic over the holidays. Especially as feeling pretty terrible all the time. Am laid on the bed now feeling like a rubbish mum. Just feel so poorly and at the point of collapse most of the time at the minute. About to enter the last week of the school holidays and not looking forward to them going back. Am happy for them as they both enjoy school but will really miss them. I feel a little lost when I have no children with me. Obviously the degree will help. 

Not had chance to get to swimming much as my father in law is in hospital so on my well nights my husband has been visiting. But have a swimming lesson tomorrow which am nervous and excited about. Last time I went swimming I wanted to wear a sign saying I have a degenerative joint disease, sorry I am so slow. It was quite comical really as everyone started in the slow lane with me and after being delayed by me for a length or two they moved into the next lane ha. But I did feel a bit down about it. Especially as probably not slow because of joint damage but because I am actually a rubbish swimmer. Hence the swimming lessons. Have got a waterproof mp3 player too so I can lose myself in my music while I swim. I used to love the gym but also enjoyed listening to music do I did find it boring just going in straight lines with just the music on at the pool. 

I need to swim as well now finally having success with weight loss. 22lbs off in 6 weeks yay. Clothes fitting better and a lot more positive. Rob has done really well too and means a lot to me that he did it with me to help in those first few weeks. Now feels easy and not tempted to cheat at all. Did slimming world for a long time and people often say you can eat anything. I really struggle with it as don’t actually like healthy foods. May come as a surprise that a fat person doesn’t like healthy foods ha ha.

In another bit of news I have literally just been offered a job interview for the job I applied for ages ago as a weekend receptionist in a nursing home. Very out of the blue as it was ages ago. Going to try to not get my hopes up but it would be perfect. I can’t stand not working. So will update the blog with how that goes. It’s on Wednesday so fingers crossed.