A change is as good as a holiday! — February 15, 2018

A change is as good as a holiday!

I haven’t written my blog in a really long time. I started the blog to keep my friends and family up to date on my health without me having to tell everyone. And honestly, I stopped because it became depressing. I didn’t want to write it so I was amazed that anyone would want to read it. So I decided I need a change.

I decided to ask the advice of the people closest to me. I have no clue why I chose the two people who don’t read the blog. Nor have shown any interest in discussing it. They both already think that they put up with me way too much. And they are happy to tell me that.

I should explain. You know those husbands that shout ‘honey I am home’ and bring flowers home every Friday. I don’t have one of those. And those best friends who greet you with a kiss on the cheek and a hug. I don’t have one of those.

My husband has a lovely habit of being distracted by the tv or the radio. As you can imagine this never, ever causes arguments. But sometimes this works to my advantage too. The first time I used this was when I wanted two rescue cats. I asked him during an England football qualifier (for………. something!) and left the house with a huge cat carrier. He still claims he had no idea that I was about to bring 2 cats home. Just as England lost. Excellent timing as always. So when I asked him about this I got the familiar ‘yes love’. He is probably now living on a knife edge wondering what he agreed to.

And then I asked my best friend. We bonded on the school run after discovering we both have very similar opinions on life. You know all those things that you think but would never ever say. Well I do say all of them, to my best friend. And the worst thing is she pretty much always agrees and has a mind that is just as messed up. I think her biggest concern is that I will be arrested or admitted to a mental health unit.

I think you would agree these expert opinions could be taken more ways than one. But I decided they were both positive so should go ahead with the new blog (Ssssh. They were positive!).

My next problem is my discovery that I am not a natural writer. You would not believe how long this has taken me. I would love to say that I slaved away for hours to get every detail right. But what happened is, after spending an hour looking for the laptop I discover it is obviously not charged. Another search ensues for the charger. I finally get the laptop plugged in and wait 10 mins for it to boot. Then I do the blog for 30 seconds and get distracted. And that’s it for another week when the same routine starts all over again.

The idea with the blog this time is to look at my life differently. I won’t lie about the fact I have been really down. And it isn’t natural for me to be like that. But this life is so much easier with a sense of humour. So instead of writing about my week. This will be more an observational take on being poorly and disabled and the things that not everyone gets to experience.

So welcome to the new look blog. I am still fighting the whole wide world. But hopefully with a smile on my face.

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4 months of sulking!! — September 8, 2017

4 months of sulking!!

Yep that essentially describes the last 4 months. I think I am doing better now. I went through a really difficult time accepting my life as it is now. A really hard time. You forget for a second and when you remember it hits you like a brick every time. Everyone who knows me knows that I often have stupid ideas. Most of them I never see through but my poor friends often hear them. Some examples are burlesque dancing, netball, rock climbing, ice skating. I have never been through with any of these ha. The hard part is I still get my stupid ideas and I now can’t go through with them even if I wanted to. My stupid idea part of my brain hasn’t caught up with my broken body. The worst thing is I do have some ideas that are disabled appropriate and I still don’t do them ha. I think I have been focusing too much on what I can’t do instead of what I can.

I do have a good life. I am happily married (most of the time ha), I have two absolutely amazing kids and I also have brilliant friends. But sometimes its hard to remember that when I feel like I have the flu every single day.

I still love my electric wheelchair. It really has been life changing. I am so incredibly grateful that Motability let me change my car early to get a wheelchair hoist but the car has been delayed. It was ordered in June and not even built yet. They have promised me the next 5/6 weeks seen as I told them Rob works with Motability and knows people ha ha. Once I get that I finally have my independence yay. At the moment I rely on other people to get the wheelchair in and out of the car so can’t really go anywhere alone. Plus the car has all hand controls. I drove for a long time yesterday taking a friend home and it was just too much. I came home crying and had to go straight to bed.

So the kids are back at school. I am enjoying the rest time but also miss them. They are both doing great but still have their problems. Finley broke my heart one day when he told me he is different at school because nobody understands him. He does amazingly well though and he has friends and generally seem happy at school. He is still incredibly behind and we will probably introduce one to one help at school next year but I want him to concentrate on relationships and having fun at the minute. Jess is doing a lot better too. The anxiety and other issues are still a huge part of her life but she is working hard to help herself and is doing a lot better. She finds break times overwhelming at school and has permission to stay inside. She has been trying to go out though and really proud of her. This morning she told me she is staying in now but last year she wouldn’t have even tried. She also has a residential in 10 days which terrifies me. Her teacher is fab though and is the same teacher she had last year. She has put her in a room with her best friends and has put herself in the room next door to help her. So am about to have 3 very anxious days waiting for phone calls. Her teacher is going to keep in touch though thankfully.

So trying to think of any news. We were mean to be going camping this weekend but its been delayed due to the terrible weather. We agreed from the beginning that we are fair weather campers ha. Especially with me needing to use the wheelchair. Found some lovely sites for next year too. Ooh exciting plans for next year too. We are having a party for our 10th wedding anniversary. It will be our chance to have a good night after a disastrous wedding. For those who don’t know I will tell you the wedding story. Here goes…..

It was booked for the 6th December and all was going well until the 1st October. The hotel rang and said that they were going bankrupt and closing. We were either going to lose our money or could get married on the 11th October. Obviously we had to take the new date as couldn’t afford to lose the money. So had 10 days to move an entire wedding plus my bridesmaid and page boy couldn’t come as they were on holiday and Rob’s usher and his wife were away so we were gutted people were going to be missing. But somehow we pulled it all together. I had to work the night before the wedding as I couldn’t get it off and came home and said bye to Rob who was going to stay at his mums and cried. At the time I didn’t have many friends. Because of that I didn’t have a hen night. But the friend who was meant to be with me the night before the wedding is the friend who was away. I felt so alone. It was horrible. I was so grateful to the best man’s girlfriend who I didn’t even know that well at the time. She helped me rearrange everything and stepped in as bridesmaid. As a make up artist she also ended up doing everyone’s make up. She also did the unthinkable whilst my hair was being done and changed an explosive nappy as Jess was little at the time. So at this point it was all good. The actual service was lovely and I became Mrs Dodsworth with no real drama. The service was in an old chapel in the hotel grounds which was lovely. We then went over to the hotel for the reception. Again everything was going fine and then the fire alarm went off. It was silenced quickly and then the manager came over and told me it was a false alarm. Huge relief. The someone ran out of the kitchen screaming ‘Fire, get out!’. Ace!!

So we are all stood outside in the freezing cold while not one, but two fire crews are inside in breathing apparatus fighting the actual full blown fire. The…umm head fire person, not sure what they are called, told me they weren’t sure if they would have to condemn the building but they would do the best to get us back in. Credit to them that some time later they did get us back in. But the kitchen and some bedrooms were destroyed and the whole place reeked of smoke and petrol as the fire brigade used petrol fans to try and get rid of the smoke. And the party never really got going after that. Then I had an 18 month old child that no one helped with. So even in my wedding dress I was on nappy changing duty and left the wedding party to get her to sleep in her pushchair at one point. Then our wedding night was spent in the honeymoon suite with her asleep in between us. Very romantic ha. So as much as I am very happily married I really did miss out on a wedding day and feeling like a princess.

So the kids are older, I have amazing friends and am really excited about having the party. But yet again it hit me that I will be in my wheelchair. I was looking at dresses and the one I initially looked at would not look good in a wheelchair so it definitely changes things. Such as there will be no first dance ha ha. But it gives me something to be really excited about. And I need that so badly. It has also motivated me to get back to losing weight as well as I am piling it on from comfort eating. So I am doing weight watchers and also going to overeaters anonymous as thought it was time to accept I do have problems with food. So far I am finding it really helpful.

So last thing I should address really is my health. It’s awful ha. I seem to be going downhill rapidly. I am exhausted constantly. It genuinely feels like I have flu every day. I just want to be in bed. But obviously that isn’t an option. Rob is doing so much extra and I feel bad that sometimes it feels like I barely see him. He comes home and I go to bed. Its the only place I am comfortable. I can get a reclining chair through occupational therapy but currently have no where to fit one. I am struggling really badly with the methotrexate for my psoriatic arthritis. It isn’t helping anyway. I have swelling and pain literally everywhere. So I just don’t see the point in continuing. Same with the gabapentin for fibromyalgia. Although I find it difficult to work out which one is which to be honest. Am due my MRI soon as well to check for more brain lesions leading to a possible MS diagnosis. Basically my immune system hates me. I have a lot of dizziness and eye sight problems which terrifies me because of driving. Obviously if I am ever affected I never drive. Sometimes though I just think its the fatigue as its like my eyes are really tired. I am getting a lot of problems with trembling. And losing feeling completely in my joints or them just giving way for no reason. So yeah its tough. Not just painful joints sadly.

Anyway I have wittered on enough. I will start updating more again. It does me good to get everything out of my system. Had some free time finally today because sat waiting for Virgin as have no home phone line which is a pain as my care line is connected to it to contact the falls team if I need them. So obviously can’t go out as it needs fixing.

Day out :-)  — May 1, 2017

Day out :-) 

We went to legoland discovery yesterday and despite my husband discovering how heavy my new wheelchair is it was a huge success yay. OK…..so there were a few minor crashes at first while I got used to the controls. There was none of the stigma of a mobility scooter and I was independent and could go where I was woo hoo. Only downside is the kids constantly trying to get me to suddenly recover and get out of it so they can play. So they were delinquents in the car park racing around with it on full speed while I sat in the car and Rob lost the will to live while chasing the kids. I also had many times of panic when the wheelchair seemed to be struggling. It wasn’t known to me that jess was riding along on her heelys behind it to drag her along. And the battery was awesome and hardly went down all day which was a huge relief. And it didn’t feel like it was going to tip over like the mobility scooter does. So for once I am happy ha. 

Starting to enjoy not working. Just because we can do things on a weekend. And also it’s nice not having that pressure that I have to be well enough. In fact I slept through when I would be at work on Saturday as I had taken jess to gymnastics but hardly slept the night before. My sleep is terrible at the minute. Just due to pain. The painkillers I used to be on my body has become immune to. I have some for neuropathy which is a major problem at the minute but honestly aren’t keen on taking them due to the side effects. Mainly weight gain. But then I am pretty immobile at the minute and struggling. So got an appointment on Wednesday to discuss the pain. My last two appointments were with a registrar who looked like she wanted to cry when she looked at my notes ha. So I thought I should be good this time and see a doctor who knows me. The doctor I saw last week also didn’t know how to spell psoriatic which didn’t fill me with confidence when I have psoriatic arthritis. 

But she was very good with jess who also had an appointment. She needs to have blood tests which is causing her huge distress. Frankly I could tell her I am sending her to be executed and she would react better. I have never done anything to make them afraid of needles and they often come to my 7000 blood tests and I never react and they both enjoy stabbing me with my own injections. Again….another way of them not being afraid. But no, I think jess would rather run away than go for this blood test. It’s my worst fear, to check her for arthritis. There is no denying that despite the fact I am the first person in the family to have an autoimmune disease it is hereditary. I don’t think she will have it yet. I think she just pushes herself so hard at gymnastics that she is picking up regular injuries. But to get her to go to this blood test I have promised she can have a new doll and if she does have arthritis she will get pretty crutches and can have an electric wheelchair. So she is now sold on the idea. Nothing like bribing your children. Sadly finley is the one who actually shows more signs of arthritis but has had blood tests and no inflammation yet thank God. I can’t help but feel guilty but I thought my health was fine when I had both kids. We had a few months from hell when finley was two and I was diagnosed and he was diagnosed with special needs within 3 months. That was not a good time. 

When you have worked since 16 the thought you might not be fit enough to work is scary. I have never been on benefits and didn’t even know how to. I was lucky with my disability application that it went through straight away. Although we are thinking of contacting them to change the car. I have become so much more disabled I need some more adaptations really. Which sucks. But I know how lucky I am that the government provide this. I see people in the support groups online from other countries who have it so much harder than we do. 

Anyway have whittered on enough. As you can tell I am in a better place than the last blog. So bye 👋 

All change — April 19, 2017

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  — February 1, 2017

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. 

Been a while oops — December 18, 2016

Been a while oops

Honestly I was really good after the last blog. Quite upbeat. But the last few weeks have been terrible and I am struggling to stay upbeat. The inflammation on my si joints are causing my mobility to deteriorate very quickly. And on top of that the fatigue has been horrendous. To the point that I have been scared with how terrible I have felt. Especially because I know my liver isn’t functioning properly. I have just felt like I am missing out on life and had lots of tears over the last two weeks. I have been working a lot as well which probably hasn’t helped but when I say a lot I mean maybe 20 hours a week. Which two years ago would have been a breeze. 

I think my lowest moment was not being able to stay awake with the kids. It was 4.30 and Rob was due home at 5.30 and I was conscious of what was going on around me so they were perfectly safe but I just couldn’t function. Obviously once Rob came home I could go to bed and sleep and I slept all the way until the morning. 

It’s so hard to explain fatigue to someone who isn’t ill. It’s like your body shuts down. You want to do things but your body won’t physically let you. I have constantly felt at the point of collapse. 

So yeah…..the last two weeks haven’t been good. 

I thought I had got over the depression of my life being stolen by this horrendous disease but it appears not. Thankfully since Friday the fatigue has lifted a little. The pain and my mobility is just as bad but I can cope with that. Life is painful but at least I can stay awake and function. 

And my head is all over the place about the gastric bypass. Am so scared how my body will cope and also if the first few weeks will just make me more depressed than ever with recovery from surgery on top of everything else. So am giving slimming world one last ditch attempt. Last time I went I was on so many drugs with weight gain as a side effect and nothing I did was good enough. I just couldn’t lose weight. So very nervous at first week weigh in. Lost 9.5lbs. Over the moon. So at least something has gone right this week ha. 

The kids are great. Although jess has been getting stressed at school again. I think that is just her being ready for the Christmas break though. So happy to have them home for the next few weeks. No school run stress and hopefully lots of fun. 

Also forced myself to start reading again which I am hoping will help me mood. I guess everyone needs a little escapism. 

We restuffed all the sofa cushions yesterday to try and help me sit down there. I am constantly laid on the bed as it’s the only place I can get comfortable. The last thing we need to do is make the sofa higher so I can get on and off easier. But all the raisers you can buy won’t fit our sofa which is typical. So there might be a phone call made to my dad soon ha. But am hopeful what we have done will mean I can spend more time sat down there. 

I still have no hair. I keep thinking it is growing back but then the bald spots appear. I am so bored of people asking me if it’s a choice. Complete strangers. What a rude question. I don’t want to have to tell strangers it’s a combination of autoimmune disease and chemo drugs. It’s none of their business. 

OK my last thing is I am excited about Christmas. All the presents are bought. We just need to wrap. I am working Christmas eve and Christmas day so need to be more organised this year. I don’t mind working though as it’s only 3 hours so hardly missing out on anything. So am feeling the Christmas spirit yay. 

Eek I am bald  — November 15, 2016

Eek I am bald 

So after weeks of being really fed up with clumps of hair coming out every time I touched it I did this….

Can’t actually believe I am showing everyone this. I shared it on some support groups on Facebook and was overwhelmed with support from other psa people with and without hair. 

Other than losing my hair things are good. I am spending a ridiculous amount of time on degree work. It is way harder than I suspected it would be. I guess because it’s through open uni we don’t get the lectures or anything you get at conventional uni so it’s a lot of reading and online lectures. But I do love it. Especially now the kids are both at school. I would be so bored without it. And now my hair is gone I can start swimming again. I couldn’t go as last time it was coming out in the pool and a swimming cap just ripped it out.

Just changed my pain relief today and it’s so much better. The pain has been really getting me down so really appreciate my doctors changing them as it’s now morphine and a lot of doctors don’t like giving it. I am starting with yet another case of tonsillitis again. 

Desperately trying to get back on my diet. Since it was confirmed I am getting the gastric bypass I have really struggled. I know I won’t be able to eat for much longer ha. So need to get motivated. My new work uniform has helped to motivate me.

And am loving working again. It’s the perfect hours for me. Although have agreed to do a week of full days next month to cover the day time receptionist. Already planned to spend the money on a new bed for me and Rob, ooh the excitement.

Finley is plodding along as usual and being his usual funny self.  He never fails to make me laugh.

We are having some problems with jess who is struggling really badly with anxiety attacks. But between us, her teachers and pastoral care at school she is improving and getting back to her normal self a bit.

And that’s about it. A cheerful positive blog for once ha. 

Hmm wonder what this blog might be about….. — October 29, 2016

Hmm wonder what this blog might be about…..

OK so anyone who is friends with me knows my hair will be in this so let’s get it out of the way ha.

Over the last two weeks I have unexpectedly lost over half of my hair. I am surprisingly OK with it. I think all the other symptoms and side effects make me feel so poorly that this one is actually bearable. Obviously it has done wonders for my confidence ha. Thank you to kelly who yet again has been a great friend and has endured head scarf shopping and been forced to look at a ridiculous amounts of photos of hats, scarves and bald spots. So I don’t think anyone will see my hair for a while. Hopefully it will grow back again but if not I have so many hats etc that I am well equipped ha. I am currently sat with a colour remover on the hair that’s left so I can send it back natural. I can not be bothered keeping up with my roots on hair that no one sees ha. 

So this is me in a scarf…..

So my next subject is my little finley d. He has always been such a sweet loving child. Yeah….not any more. He is so moody at the minute. I think he is learning from the best. His horrible pre teen sister with the attitude from hell. But he had a hospital appointment the other week and it seems we have finally got to the bottom of his poo problems (excuse the pun) and it seems his muscles are working properly to hold the poo in hence he constantly has dirty pants and doesn’t even know as he doesn’t feel it. Poor little dude. So we are trying out different ways of helping him with pull ups, incontinence pads etc. The only way of fixing it is surgery but not guaranteed to work and they wouldn’t like to even consider it at this age. 

Just had them both home for a week holiday and really enjoyed it. Rob had 3 days off and we even managed to do stuff. 

Blackpool was a small nightmare in the wheelchair. Most of the drop curbs aren’t actually dropped. So I nearly got tipped out of the wheelchair 100 times which was fun ha. But other than that it was a good day. I just had yet another love hate relationship with my wheelchair. 


I have made a wonderful discovery while I have been ill and that is that fatigue isn’t being tired. It’s actually a world of hell that I am in most days. Maybe I just don’t have the energy to care about my hair ha. So I uses trusty Google and found a list of symptoms for fatigue associated with autoimmune disease. 

  • muscular pain, joint pain and severe headaches
  • poor short-term memory and concentration, and difficulty organising thoughts and finding the right words (“brain fog”)
  • painful lymph nodes (small glands of the immune system)
  • stomach pain and other problems similar to irritable bowel syndrome, such as bloating, constipationdiarrhoea and nausea
  • sore throat 
  • sleeping problems, such as insomnia and feeling that sleep isn’t refreshing
  • sensitivity or intolerance to light, loud noise, alcohol and certain foods
  • psychological difficulties, such as depression, irritability and panic attacks
  • less common symptoms, such as dizziness, excess sweating, balance problems and difficulty controlling body temperature


In case you are wondering all these are a joy to live with. I think two in particular make Rob and the kids want to kill me. One being sensitivity to loud noises. I am constantly turning the TV or radio down so no one can hear it. Second one is inability to control temperature. Everyone else might be sat shivering and I am sat in from of a fan or the opposite way around. Rob actually puts his coat on to get in the car as despite the fact we are a few days away from November the air con is still on in my car and there are no signs of me wanting to increase the temperature in there. It is currently about the same as a fridge and just how I like it. 

Ooh one good thing. I did my first uni assignment yay. Not got a mark yet and already behind with the next one but am proud anyway ha. 

Ooh am nearly ready to start my new job. In fact officially start a week today yay. Done two days training and then going in Wednesday and Thursday to work on reception with someone else to learn the ropes then am set free ha. Still so excited about going back to work. I need it so much. 

So I think that’s everything I have to report. I am quite cheerful though which is good. I struggle to stay positive on my most ill days but think I am having more fun and laughing more. Went to white rose last night with kelly last night and was so much fun and a huge amount of laughter. I definitely need to do more fun things. So am done. I am sure I will be back to fill everyone in on how the new job goes eek. 

The worst few weeks  — October 15, 2016

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  — September 27, 2016

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! 🙂