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.

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.

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! 🙂 

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…..no bigger than it is. OK I was slightly miffed but I asked. In hindsight it was a clever answer ha. I just have and always will have a problem with people who don’t worry about people’s feelings. Thinking your opinion is more important than someone else’s feelings or thinking the truth is more important than someone’s feelings to me is not right. And I aren’t asking anyone to change. I am purely saying I don’t want that around me. 

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

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

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

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

So bye for now 

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.

Tonsillitis again — June 15, 2016

Tonsillitis again

My 5th lot of tonsillitis now this year. It started a few weeks back but I tried alternatives to antibiotics and it clearly didn’t work as I was awake all night in agony. So I bribed my 4 year old to make him behave and off we popped to open surgery. Luckily the docs have changed it recently and a nurse triages everyone to see if they should have got an appointment instead. So it was only a 15 minute wait. Yet it cost me for a comic, chocolate and sweets as I anticipated longer than that. Plus I can’t buy a comic for finley without jess getting one as she would soon notice he had one after school. And then guilt set in and she got sweets as well.

Back to the tonsillitis, the doctor wants to me have the tonsils out really but it means stopping all the psa treatment or I would likely get an infection post op. So for now until we decide what’s best I am stuck with antibiotics that make me feel sick. And found out last week my kidneys aren’t working properly and my body is full of toxic fluid. Really helping my diet.

Our doctors have always being great but we have a new practice partner who has taken over as my named gp. She is fab. Like the very helpful doctors on TV ha. She is unhappy about my pain levels and is seeing me every two weeks to try and help me. Saw her last week over my poorly twisted feet and booked an appointment with her for next week then she saw my name on the list for another doctor this morning and switched me to her which was nice.

I was really angry last week as someone told me because they had seen me out on a weekend (normally in bed after methotrexate on Friday) then I must have been feeling better. People really need to think before they speak as it made me so angry. I have to go out most days as I have no help at all other than when my husband is home from his full time job. It astounds me that people put pressure on me to see them when I am this ill. I would never do that to my friends and family. I try so hard to please everyone but ultimately the only people I care about pleasing are my kids. I have little energy so what I have is spent on them and if people don’t like that then honestly I don’t care. That’s my rant done for this blog.

I have another friend who has recently dropped off the radar and who isn’t replying to me. I appreciate I might not be a lot of fun now but this has definitely shown me who my true friends are. And I know I am incredibly lucky to have the good ones. My closest friend is probably my school run friend. And honestly we do have fun. I don’t constantly moan at her about my illness. Because I don’t need to. She knows what I am or aren’t capable of, never puts pressure on me and still treats me the same as before. I am incredibly lucky to have 4 close friends and if any of them read this I appreciate and love you all.

Ooh I applied for my first job since having to leave mine. It’s a whole 6 hours a week working Saturday and Sunday evening on a reception desk of a nursing home. I just feel so worthless doing nothing. I am lucky that financially I don’t need to work but for my mental health I need to. I have always worked. I applied yesterday but not sure I will hear anything. I am stupidly over qualified and over skilled and am ill and disabled. Really not the best mix for any job candidate. But I feel better that I finally found something I could do. I am planning on doing my degree in September so that will take up a few years but what then? I refuse to accept I can’t work. I just have no idea what I am physically capable of doing now. Even if they slow down the progression of the disease I have permanent damage to most joints. It’s unlikely I will ever be off crutches again. And then I also can’t do 9 hours sat in a call centre as I have damage to my fingers and hands. So I am very limited. But it’s not impossible.

Onto the kids now. Finleys speech is getting so much better but after research is definitely looking like apraxia with maybe aspergers. I have watched videos of kids talking and they sound just the same as him. His teacher attended his speech therapy with him on Tuesday as he won’t talk to the therapist and she said he made her cry with how hard he tried. So proud of him. But he is becoming more aggressive recently when he can’t communicate which I am eager to nip in the bud.

Jess is having a really hard time at the minute at school with bullying. One of the little darlings smashed her glasses today which cost me a lot of money as I pay to get the lenses thinned so they don’t look like jam jar bottoms glasses. Spoke to the head teacher briefly today but going in tomorrow as so angry. Recently she has started getting really angry at home and taking her bag moods out on us but it’s how these kids behave at school and also how their parents behave. In the last school holidays she was an absolute angel as no stress about school. I was concerned Monday as she come home telling me she had made friends with the ring leader. I wasn’t happy so spoke to pastoral care who was dealing with it and neither was she. Today these children were all having a go at each other and she got caught in the cross fire. We have sat down to talk properly tonight. She had rehearsals for a show she is in next week and was really stressed about school when she went so sent her with a phone in case she needed us. She ended up crying so she got picked up and bought home early. She has been a little down about the show as it’s next week and she was struggling with some bits but when Rob picked her up tonight they said she had done fantastic which we really needed her to hear. We sat down and has a chat. She has written a letter to the head teachers and I have written a note of things I want to discuss tomorrow. I understand the school deals with a high percentage of children from families with no discipline and they do have a battle on their hands. But I don’t care about that. I care about my baby. She has told us tonight she made friends with the ringleader as she then thought she would leave her alone. She shouldn’t be worried about that. And they have managed to upset me when I am really ill and sleep deprived so good luck to the school tomorrow. I just want my kids to be happy. They don’t need expensive things or fancy holidays. They just need to be happy.

And that’s all for this blog, got some things off my chest so feel better 🙂

Christmas is over — December 28, 2015

Christmas is over

So I was so excited for Christmas this year. First time we didn’t have money worries and first one I have had where not working and could spend it with the kids. But it was so hard. I hadn’t banked on that. Chronic illnesses are cruel. You have the opportunity to do something but your body stops you.

Am laid in bed watching a film alone. Rob has taken kids to his parents but I just didn’t have the energy. Felt awful as jess wanted to stay with me but I just wanted to sleep and told her she had to go. I treated myself to a laptop for Christmas, haven’t even used it as have no energy.

In fairness Christmas started badly. On Christmas Eve as the kids were going to bed I collapsed and was sick so Rob had to do everything. Christmas day I just about managed. But probably pushed too far as boxing day was so hard. Went to my sisters and fell asleep. I was anxious as there is a lot of flooding near us at the minute. Truly devastating flooding which has destroyed homes and businesses. But all I could worry about was getting home. We have 3 routes there as it’s 7 miles from home. Two routes were flooded. The third was clear but was a flood risk. Basically we have to cross the river somehow. I hadn’t realised how bad it was until we saw the flooding and how close we were to not getting there. Anxiety set in then. We were 7 miles away from morphine. A pretty scary thought. I am on high doses at the minute. I can reduce them when things improve a little but if I hadn’t have got home that night I would have started in withdrawal. I am putting emergency doses in my car from now on.

Yesterday we went to a panto. It was good but sitting for that long is a real issue and yet again I was exhausted and fell asleep.

I feel like I haven’t got enough energy to enjoy anything. We have been out a little today. Went shopping on my mobility scooter. That’s good at least. It means I can do things. But even that is exhausting which is insane. I haven’t got back on my diet yet cos I haven’t cooked since Christmas day. I haven’t binged at all though which really proud of actually. If I gain this week it’s not the end of the world but I really didn’t want to.

So the Christmas I had such high hopes for was disappointing. I feel like a rubbish wife, mum, friend……..well everything. I am due to have surgery on my shoulder on the 8th January then I have my consultant the week after. I am going to write my problems down so I don’t forget anything. See if he has any other ideas. I know pregabalin, gabapentin and humira are all drugs which have all been suggested before. The humira is part of a group of biologic drugs but we have to meet the local nhs’s criteria to start on them as they are very expensive drugs. The first two treat the nervous system. All come with more side effects. All trial and error sadly.

Thats my moan over and done with. I really hope everyone reading has had a fantastic Christmas x

Good day — October 2, 2015

Good day

So yesterday was a good day. Firstly received a phone call from the ot therapist. They are coming out on Tuesday to assess the home for adaptations. So happy. I am in so much pain at the minute. I refuse to increase my pain relief anymore. I am already on hard core pain relief so if I increase anymore I am just going to become a zombie. So looking forward to the solutions for the stairs.

Second thing. Had my first weigh in. 6lbs off. Very happy. And very focused. I want 4 off this week and at least 2 stone for Christmas. Got the slow cooker on with chicken and loads of veg. Thanks to my hands being so bad I can’t cut veg. So use frozen. For lunch am having loads of veg with some slimming world meatballs and had some Hifi Bars and strawberries for breakfast. I do really want to try done butternut squash chips in the air fryer but no way I can chop them. But Rob has said he will do it this weekend so I can give them a try.

My bad thing is a poorly little boy


Took him to the doctors yesterday as he has had diarrhoea for three weeks. He has a history of lactose intolerance so as the doctor can’t find anything wrong she said to look at changing his diet again. Last night he started with a temp and he is so poorly. He has not moved off the sofa and is having paracetamol and nurofen and is still a little hot water bottle. Hate seeing either of the kids ill.