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. 

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. 

Other stress 

Had a really stressful week due to other problems not health related for once. Been made to feel I am over reacting and getting stress the day after methotrexate when am struggling to function. Luckily I have a great husband and best friend who I have talked to and they remind me I am within my rights to feel as I do and I aren’t letting it get to me. I generally believe that unless people have something nice to say then they shouldn’t speak. I have been bullied most of my life. In school, in work, pretty much everywhere. Generally the same insults. I am fat, look like a whale, never seen a bottom so big, am disgusting. Well all that is the truth. Does that make it right that people tell me that. You could argue they are just giving their opinion. Does that make it right? In my eyes no. I don’t understand why anyone would give an opinion which would hurt someone when it hasn’t been asked for. I remember many years ago shopping with a friend and I tried a dress on and I asked the age old question…..does my bum look big in this? Her response…..no bigger than it is. OK I was slightly miffed but I asked. In hindsight it was a clever answer ha. I just have and always will have a problem with people who don’t worry about people’s feelings. Thinking your opinion is more important than someone else’s feelings or thinking the truth is more important than someone’s feelings to me is not right. And I aren’t asking anyone to change. I am purely saying I don’t want that around me. 

Onto health…..I had a steroid infusion a week before the school holidays started and am so grateful. Only used my crutches a handful of times over the holidays so far. The pains are starting to come back now so I am sure I will be back on them permanently in the next 2 weeks but it’s been great to get some relief. Am now 5 weeks into new treatment and some days are better than others. Yesterday was terrible. Didn’t help that took all my morning tablets and was sick an hour later so unsure how much actually made it into my system. Was very grateful when my husband got in from work last night. Feel so bad for the kids when I have a bad day. Not fair on them at all. Was laying on the bed a lot as felt I was going to collapse if I stood up. So hopefully a better day today and going to the park with my best friend and her kids. The puppy is starting to calm down a little too. We went on Monday and the last time we went she just stressed at other dogs but this time she was good for most of the time. So looking forward to today. Trying to be organised and sort a picnic. School holidays are very expensive ha. We also all went to a media museum last week which was great. A lot of walking so used my crutches but managed with a few rest stops. 

Have rejigged a lot of medications as both me and my doctors accepted I wasn’t losing weight with them. 5 weeks in and I am 19lbs down. So incredibly happy. Long way to go though. 109 lbs to be precise. I was a geek and did a chart ha. 

I have an appointment on the 30th to speak to a surgeon about gastric bypass. Not sure what to think at the moment. My initial thoughts were yes yes yes but managed to lose weight myself since. But then I am 36 and have always been overweight so maybe it’s time to accept that I need help changing that. So looking forward to the appointment and finding out what they think. 

Anyway best get ready for the picnic. Want to go dog lead shopping as well. She keeps cutting the kids legs with it so could do with a thicker one but not sure they exist. 

So bye for now 

Brace yourself…..a positive post

I love my new pretty activity tracker. Wanted one to do all the normal track sleep and steps but needed one that counted laps and strokes when swimming.  There are 3 on the market that do this so had a nightmare trying to find one that actually did what I wanted. But collected it today and love it. 

This is all part of the losing weight problem. Been back to the doctors today. We have now changed two more meds. Why do all of them have weight gain as a side effect. As if poorly people don’t have enough problems. But I changed one 3 weeks ago and lost 14lbs within 2 weeks then the weight loss has stopped again so let’s see how I go with these. 

Degree is getting closer. Officially starts on the 8th September. My finance is all sorted but waiting for my disability grant now. They tried ringing today to sort that out but I was driving so will ring them tomorrow. 

And then finally think have found some volunteer work relevant to the degree that I actually want to do. Had my interview today and am going to be a community champion for arthritis care. Very excited. I will be holding support groups and doing talks. They were really impressed that I am still trying to push my life in a positive direction despite being in the worst 10% of people with autoimmune arthritis. So I am going to have colleagues and something away from the house again yay. Just waiting to do my training. 

Rob has been home for two weeks and honestly has been rubbish. Have been in bed ill for most of it. And when I have been awake he has annoyed me ha. We have this everytime he is off. I am excited for him to be off and then when he finally is he ruins my routine and annoys me ha. Poor Rob can’t win. But we are spending our second night away from both kids ever on Thursday night. So going for a romantic date ha. OK so we are going for a meal and then will probably argue about him putting his jeans in the wash with all the pockets full. 

So that’s my exciting update. At least it’s slightly positive for once.