Need to sleep  — September 18, 2016

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 — September 10, 2016

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!! — September 3, 2016

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! — August 25, 2016

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  — August 18, 2016

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… 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 — August 2, 2016

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. 

Another appointment  — July 15, 2016

Another appointment 

This time with the rheumatologist again. I did find out I have an achievement. I am in the worst 10% of psa sufferers in the UK with life long disabilities and deformities. Hey at least I am a high achiever at being ill. So new treatment plan starts on Tuesday. I will be doing a lot more injecting myself, oh the joys. And more delightful side effects. 

Been calorie counting for a week after dietician said no more slimming world. I need to ensure I have exactly the right amount of fat, protein and carbs or my body won’t process it properly. It’s actually going OK so far. Not weighed myself though which will be the true test if it’s actually working. Joined the gym though, obviously can’t actually use the gym. It’s purely for swimming. It’s a lovely pool though. And no restrictions on times like at the council pools plus it’s actually a lot better disabled access to the pool which is good. The gym is upstairs so another reason not to visit it ha. Although I had my first steroid infusion in a while today so hoping I will be skipping around pain free in 48 hours. The effects are meant to last 3-4 months but seen as my immune system is incredible at destroying anything good the average for me is 2 weeks. But I’ll take it. 

So not as moany today. Rob has just taken the kids pokemon hunting though which I hate. It’s just another slap in the face for disabled parents. But the kids have come back over the moon with all their pokemons so it’s nice to see them happy. Especially with all the problems finley is having. He has an ankle problem that I do which is causing him pain whenever he walks and then his recent blood tests came back deficient of vitamin d. That terrified me as it was the first sign in me that all was not well. It’s incredibly common to have low vitamin d and an autoimmune disease. So just keeping fingers crossed that things get no worse for my little man. 

Night out didn’t happen  — July 10, 2016

Night out didn’t happen 

Started being sick about 2ish plus had pretty much cried all day so Rob finally made the decision we weren’t going. So spent my Saturday night in pyjamas with my ankles elevated. 

My wonderful best friend is looking after kids after school tomorrow so I can go to the doctors with no kids and tell them just how low I am. Trying to decide about swimming as well. The local leisure centre is undoubtedly cheaper but so restrictive with the times. Looking at a private gym with a pool which is quite pricey but is it worth it? Can’t even make a simple decision like this lately. Would love a friend to go with to motivate me and be less lonely. 

Both ankles are just as bad today, wrists and elbows are bad too. Have written a list for the doctors tomorrow. It’s a nice doctor at least. 

I know it’s impossible to get the old me back but I just want a little of the positive, cheerful me back. I don’t even like talking to people at the minute and never been like this. So am really hoping the doctor can help tomorrow cos I need something to change. 

So incredibly fed up.  — July 9, 2016

So incredibly fed up. 

Just to give you an idea on my level of pain today this is what my ankles look like…..

Going to a wedding reception tonight of one of robs work colleagues so a bunch of people I have never met. It’s our first night out in over 5 years. Childcare is always an issue and me asking this time just caused loads of hassle. And now been invited for a meal for robs birthday in 2 weeks with our friends and desperately want to go but guess what…..  no childcare. So looks like I’ll be sending Rob out alone. So wasting a nights childcare on going to something where I know no one, can’t drink and certainly can’t dance and thanks to my weight being it’s highest ever I certainly don’t feel good about myself. 

Sorry this is a hugely grumpy blog.

Rob doesn’t read this so I can say this but he really wants to go tonight but I don’t think he realises how much I am dreading it and don’t want to go.

Onto my next moan…my weight. No matter what I do nothing will come off and am so down about it. I was meant to go to slimming world Tuesday night but weighed myself first and didn’t go. Had put on a pound which I know is nothing but I am trying so hard I want to scream. So went to the doctors Wednesday morning and just cried. Poor male doctor was so happy he got stuck with me ha. He said my meds aren’t helping at all so despite him saying not to I have reduced some. Hence my ankles. But I can’t face taking them. I am getting to the point where I hate food. The gp said between my meds and my condition he can’t see me losing weight so has referred me for a gastric bypass. At first I was happy about this and he said it would be done in the next few months. Nope, that is the first appointment. It will be about 2 years and I genuinely can’t live like this for the next 2 years. Looked into replacing food with ‘shakes’ I am that desperate. But genuinely can’t afford it. So am back to counting calories very strictly. Not hard at all as I don’t want to eat. I don’t want to be like this anymore. 

I just want the old me back. And starting to cry yet again writing this. 

So onto other things. Finley needs glasses. His eye sight is worse than mine and that’s really saying something. So he has avengers glasses and star wars sunglasses on order. 

He looks so cute. He is desperate for them now. He keeps saying he wants to see like at the opticians. It breaks my heart and can’t wait for them to arrive so he can start seeing properly. Got an appointment for him at the podiatrist this week as his ankles roll over so hoping to get some inner soles. I also have the rheumatologist to get started on some new biologic drugs. No doubt I will cry at him too ha. 

Busy week of appointments so the week after we are having finleys little girlfriend over for tea after school. She is very cute. He says he doesn’t like her cos she is a yakky girl. But his little face lights up as soon as they see each other at nursery and the other week when I was picking him up I looked into the carpet where they wait and they were sat cuddling. Very cute. 

Both kids met new teachers this week. Can’t believe jess is at high school in two years. I got my enrolment completed for open university too and am looking at voluntary work. Seen as no one will employ me let’s see if someone will take me for free. 

Let’s hope things start to improve soon. 

Back on treatment — July 2, 2016

Back on treatment

Took methotrexate yesterday after a 2 week break due to the tonsillitis and toxic hyperthermia. It has hit me with a bang. Blacked out last night and then was sick overnight. So a day in bed is definitely called for today. Somehow still sticking to my diet. Lost a grand total of 2lbs over the last two weeks. I know I should be happy that I am finally seeing losses again but at this rate it’s going to take a stupid amount of time to actually see the weight loss. And am worried I will lose all my motivation when am having to try so hard to get such small results. Need to go swimming too seen as it’s literally all I can do.

Got a bit motivated in changing my life this week after my closest friend has moved to Brighton. I rarely saw him as our lives are so different but talk most days so am hoping things won’t change too much between us. But I do pester him. Out of boredom and being lonely. So I have finally accepted I miss working so much. I miss having colleagues and having an Andrea that isn’t just a wife and mum. But getting a job isn’t going to be easy at all. All I have done is care for the last 8 years. I am over qualified for admin roles in care and despite being the only applicant I never heard anything about the job I applied for which was perfect. So looking at volunteering roles. Found some that look really good. It will give me some experience while I am studying and give me a life as well. So am excited for some changes in September. I don’t want to be just a poorly disabled person.

Most recent blood tests were all over the place. Problems with kidneys and liver. In fairness I am laid in bed now thinking it’s probably a good idea I didn’t get that job. I could cope with the physical disabilities I am left with if I didn’t feel so poorly all the time. In two weeks I switch to new weekly injections with a biologic drug. Am scared for the new side effects but I have to try. Although the drugs can’t take the pain away as they can’t fix the damage. I need a third surgery on my shoulder and starting to wonder if it’s worth it. I actually can’t remember when the last one was but it wasn’t even 6 months ago. I know that because my sling is still in my car and only had it 6 months ha.

Had a lot of problems with jess at school recently. Just think schools are rubbish now. When I was at school back in the victorian times children actually got told off. A delightful child has been picking on her and instead of being told off they are telling me jess needs to toughen up. She is 9. Then they tell me that the other child has some problems and struggles to express herself appropriately. No, she needs to know that being mean is not right. And people can’t use special needs as an excuse with me. Finley has exactly the same expectations with his behaviour as jess. Talking of finley we are having some concerns with him as well. He cant seem to walk in a straight line and is bruised and cut all over. Got a lot of appointments with him over the next 2 months. Got the podiatrist in 10 days to see if inner soles can help him as his feet and ankles roll. But dyspraxia is also being considered. And that can also affect his speech. So yet another condition to research.

Jess was in Alice in wonderland last weekend with her drama group. We watched Friday night then I chaperoned both shows on Saturday. Oh my God the pain…….! I get really bitter I used to be able to do things like that fine. But now it’s so hard. But I managed it and glad I was there for her. And as any proud mum would think, she did great.

Another health issue at the minute is acne. My skin on my face is terrible. So fed up with it. Never had it as a teenager so certainly don’t want it now. It appears it is a side effect to the methotrexate. But obviously if I come off it the acne will go again but my joints will deteriorate further. I hate it though. Am so self conscious. Trying different treatments but tried two so far and not worked. Docs advised it’s harder to treat when caused by medication. Got my consultant in two weeks and hopefully he might have a better idea. Anyway after being awake for 4 hours and laying in bed I need to sleep again.