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. 

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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. 

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. 

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.

Pain!!

It’s methotrexate day and I am struggling anyway. Got blisters all over my scalp. They keep bleeding and are so painful. It’s just a psoriasis side effect but it’s driving me insane. I can’t put my head on my pillow without it hurting.

One great thing today is new crutches. Invested in some smartcrutches and wow they are worth every penny. Am determined to get out of bed and try them properly this weekend. My joints are all so swollen and hot and painful. My hands have gone back to seizing and being like claws again. All my inflammation levels improved for a few weeks but back higher than ever now. Also have inflammation in my bowel now so waiting for more tests there. Awaiting a podiatry referral as well. The bones in my feet are twisting and walking is agony. I was starting to think I would be wheelchair bound within weeks but the new crutches have given me a bit longer so over the moon.

Am determined to get back to choir and actually go. I just have nothing to look forward to and I desperately need it. People don’t realise how hard this is. I get suggestions from helpful people about changing something in my diet or a vitamin that cured someone. Do people think we get this ill without spending hours and hours researching? I have looked into everything. And then I have become unsociable. Because what am I going to talk about?? Every single ounce of energy I have goes into my kids. Finley needs extra help as his social skills are getting worse so we need to look at more after school clubs and hobbies. Jess already does 4 a week. And then have the puppy who I love and is no hard work but still needs a walk up and down the street. Sometimes I just don’t want to talk. Because I would rather spend my but of free time reading and escaping from my life. But no one gets it.

I was meant to go to slimming world this morning but had diarrhoea (beautiful). So have faced facts that getting to the meetings aren’t an option and have joined online. Looking at obedience classes for the puppy you and looking at craft classes for me. But am aware my hands are getting worse so not sure if the crafts are a waste of time. Sorry this is a miserable blog today. Just having a rough time. Am in bed with Ben and Jerry’s though watching zombies on Netflix so I will stop whining and enjoy my treat night instead.

Got some answers

Firstly have pretty much constantly cried for a few days. I went back to slimming world yesterday and joined again to start afresh. I was completing the application form and the dreaded question…..do you consider yourself disabled…..I answered yes. I need to face facts.

So already feeling a bit down I listened during the meeting and felt motivated and ready to go again.

As I was technically new I didn’t get weighed until after the meeting with the other newbies. I didn’t get weighed until last and thank God everyone had gone. I got on the scales and saw my weight and instantly the tears started. Luckily I know my leader. She is a true inspiration having lost over 8 stone and I instantly got a much needed hug.

I was also reeling from my husbands wage this month being £400 short due to bonuses.

Then this morning I had my appeal medical for my blue badge. In about 2 mins I won. Amazing doctor. Again I cried. He asked how my illness had affected me and I answered ‘i have lost who I am’ and just burst out in tears. He then answered I know enough. I had access to your medical records and you are incredibly poorly and there is no doubt you are eligible. Also said he would comment that the council wasted everyone’s time turning me down and it going to appeal. So I am relieved . It will make life so much easier.

Then got home and received a phone call from the doctors for me to go in on Tuesday and stop all disease modifying drugs immediately (the chemo drugs) as I am in early stage liver failure. Could have been caused by the drugs or the disease but either way fighting this disease just got harder.

So I am frankly glad for today to end but the pic below shows some symptoms of liver failure and it shows why I might be so down…..

image

Few changes

Had a quiet few days while have been trying to sort things a little further.

Had a terrible shift on Tuesday. Nothing to do with work, I love my job which made it worse. I was just in agony. My back was terrible with shooting pains down my legs and arms. Something that would normally take me 20 mins took over an hour so was just really down. Then I was overdosing on my very strong painkillers as I was taking them during the day then needed them again over night.

So yet another phone call to gp. The suspicion is inflammation in brain and spine is causing the pain, dizzyness and headaches. But thank god, no new tablets. Actually less. He has just changed me to slow release tablets so only take them morning and night. Has seemed strange today. Especially as I went out. I would normally be focusing on taking tablets with me. Was strange to go out without them. Was also strange to go so long without pain. Although due them in 3 hours and had to take some normal ones. I think going 9 hours without any real pain though is a record.

Chemo day was actually good until about 7 at night. Then I got hit with it. Sickness, fainting etc.

It was just the end to a week of worrying about this illness and about my future. I am worried I can’t carry on at work for much longer and then feel like the health is one thing after another. Then the ‘friend’ who told me that depression is much worse than what I am going through then had a go at me for quitting the gym.  Is she having a laugh. Walking hurts……yet me quitting the gym let ‘her’ down. Needless to say we are no longer friends.

On the plus side lost 7lbs. Imagine some swelling has gone down which  gave it a boost.

So need things to pick up please.

Had good times with friends though this week which has really helped.