Being Sick Sucks!
Follow me on Instagram to 'subscribe'
27th September 2019
So I think I need to help Euan's guide and improve disabled toilets in Bristol. I love having a purpose so this is my next fight. Last week I noticed that in my local hospital the quality of the red pull cords is really poor. On 3 of the levels the cord is too short and on 2 of the levels they've removed the cords completely after the renovations. I've contacted the hospital but I'm still awaiting a response. Click the logo below to order your own 'red cord cards' and join the fight to set the cords free!
17th September 2019
I had a a really lovely birthday last week.Had a great morning at the Zoo and then non-alcoholic cocktails and Nacho's by the waterfront in the sun. And topped it off with an all you can eat buffet for dinner. It was great. Unfortunately it was a wheelchair day but I embraced it and even got my self a new hat. Also, my just giving total went up to nearly 1/4 of the way there so that's very exciting.
Then yesterday I found out that my Rheumatologist thinks along with all my other health issues I also have Fibromyalgia. I don't know much about it yet, but from what I have read, it does sound a lot like me and my symptoms. He said it's pretty common to have something like Behcet's and Chronic Fatigue or Chronic Fatigue and Fribro. But I've gone for all 3! Wooo go me!! lol. Feeling kinda sad about the whole situation cos I've been working hard on the physio thinking 'no pain no gain' and I would be able to get rid of my pain by getting stronger but actually, maybe I wont. Hey ho. When life gives you lemons...
27th July 2019
Motability - One Big Day Event - Westpoint Exeter (photos on Instagram!)
19th July 2019
Being Sick Sucks! I've become a single pringle again... I do understand. My health had taken priority and I guess we were becoming 'just friends' again in his eyes. I'm not sure I'll ever not love him, but I need him in my life so I'll have to put those feelings to one side if I'm going to keep some of him. We couldn't hold hands on a walk any more cos I was using crutches or wheelchair. Our days off were taken up with hospital appointments. We couldn't go on our mystery adventures because I don't drive at the moment. We couldn't go trampolining or start dance classes. All the stuff that made me 'fun' has been sucked away. This is a very sad time and it's made me realise how much my health has stolen from me... and I guess my relationship is another casualty of these horrible conditions.
17th July 2019
Today I'm having an endoscopy. I'm really hungry and tired and I just want this to be over already. I've had enough testing now!!
4th June 2019
I've discovered a company called Warmley Wheelers that do accessible cycling in Bristol/South Gloucester and I'm hoping to give it a go when I'm feeling a bit better (picture on Instagram!)
20th May 2019
Today is Behcet's Awareness Day and the Bristol Royal Hospital for Children featured me on their Facebook page.
13th April 2019
Trying to do the diary for the fatigue service is hard(photo on Instagram!)
2nd April 2019
Been doing hydrotherapy for a while now. I'm not sure if it's helping or not. In the water I feel great. I can do what I want, and move easily. But the next day I always seem to pay for it. I don't know. The one thing I have discovered is how much better my head feels when I float with the neck float. The feeling of something pulling my head upwards is bliss. I've contacted the Neurologist to see if there's anything in this... (photo on Instagram!)
8th April 2019
Can't believe Facebook's Marketing Team have made such discriminatory comments today. If it wasn't recorded you'd never believe it! The operator is heard saying "You have to understand that some people see disability as disturbing, you will have to think about it like that". She went on to say "I have never come across a page that promotes disability". Thanks Simon Sansome for getting this out there in the public eye.
Listen to the recorded conversation at: Ability Access - Empowering People with Disabilities
31st March 2019
Had a haircut ready for starting work tomorrow. Huge thanks to Georgie Flawn from Facebook for coming to my house to do it.
29th March 2019
Day 1 with the Wheelchair. Named it Chucky. (Photo on Instagram!) Back to work on a phased return on Monday! Sooooooo nervous!!
23rd March 2019
So yesterday I got some good news. My application for a wheelchair has been approved by the Bristol Centre for Enablement. They said the wait is normally 3 months but they're going to dispatch mine next week so I'll have it by the 1st April ready for returning to work. Then last night I got really upset ... I'd seen a 'sad look' in my partner's eyes earlier that day when we were talking about my new chair arriving. I said I was worried because I thought he might be embarrassed about being seen out with me in a chair. He reassured me it wasn't that at all. It was sympathy, that I've gone from being full of energy and loving trampolining and dancing, to relying on a chair to go out. He'll always be there and he just want's to help. The truth is, it's actually me, I'm embarrassed about being seen using it! Yesterday I went on a nursing study day as preparation for returning to work. It was only 9-4 but in that time I missed one presentation because I needed a 30 minute nap, and then took a 4 hour sleep when I got home. Hopefully a wheelchair will help me deal with the fatigue and allow me participate again, and I'll learn not to hate the idea quite so much. Today I've read an article by Zoë B on 'The Mighty' and at least I know I'm not alone, and that it's helped her. I'd suggest anyone else that's feeling unsure about using a mobility aid also gives it a read.
Zoë B (The Mighty) - Needing to Use a Mobility Aid Some Days Does Not Make You 'Weak'
... "There aren’t really any photos of me in my wheelchair. I’m embarrassed. I’m embarrassed that I need it, and I’m worried about being seen by people who knew me before, and having them know what I’m like now. I want to be remembered for who I was, not to be seen as a disabled person. However, my desire to be a part of the world again in any way I can, outweighs my concerns about how people perceive me." ...
[Click Here to read the full article]
16th March 2019
I'd like to share with everyone some information I've received from Virgin Atlantic about how they are working to improve the experience for passengers with hidden disabilities. In 2017 they launched their hidden disabilities symbol designed to highlight to staff that a passenger may need extra assistance and speedy boarding. Although this scheme has been running for several years now it is only just becoming more popular as hidden disabilities and invisible illnesses become more talked about. The symbol is available in the form of a wearable pin-badge and/or a card to insert into your passport. With this symbol passengers (and their families) are welcome to use the 'special assistance' check in desk on arrival at the airport. Passengers (and their families) are also welcome to take advantage of the 'special assistance' preboarding call at the gate, to get into their seats before the rest of the passengers start to board. This will work exactly the same on your return flight. The hidden disabilities symbol pin badge can be used in conjunction with the hidden disabilities 'Sunflower' lanyard available from the 'Special Assistance' Desk. This scheme has been being offered in some UK airports since 2016 but has gained momentum in December 2018 as other airports began to participate. The lanyard tells airport staff you may need more time to prepare at check-in / security etc and allows you to remain with your family at all times.
Basically if you are traveling with a hidden disability don't be afraid to ask for assistance. People are ready to help, and often the systems are already in place, you just need to ask.
8th March 2019
So I'm having a big battle in my own head ... I need to return to work. My migraines are starting to feel a little better which is great news. They're by no means gone, but I'm rarely being physically sick, and (so long as I'm not too tired) they're kind of tolerable for a while. I'm really struggling with joint pain and fatigue (and falling over) despite all the physio and hydro or maybe because of all the extra activity. I've spoken with physio and occupational therapy yesterday and we think that using a wheelchair could enable me to return to work quicker, so they've fast tracked me for an appointment on Monday. We think I'd be less achy, less tired so hopefully less head-achy and more productive (and I wouldn't fall over) and able to get back into work at the start of April! The problem with this is the barrier inside my head. There's been a lot of Big Tears last night! It does hurt, it does wear me out, I do fall over,and I can't go far, but I can still use my legs... so should I have a wheelchair? Am I really "disabled" enough to warrant that type of aid? I feel like a fraud. I feel like I am taking a resource designed for people who are worse-off than me. And it makes it so much more visible than just using crutches. I'll stick out like a sore thumb at work! I don't know if I'm ready to 'show everyone' that I'm sick and to have people 'looking'. People are gonna ask "what happened", and there isn't an answer is there? ... "I got sicker" I guess.
A Word From Verywell - No one wants to stand out because of disability. It's hard to get over the impulse to pretend nothing is wrong, try to blend in, and worry about what people think. In the end, though, we need to take care of ourselves and manage our illness(es) in the best way possible. You shouldn't have to suffer because some idiots don't get that.
4th March 2019
Had a fantastic afternoon on Saturday (2nd) in the Presidents Box with the President himself Wael al-Qadi (and Karim Mardam-Bey) at the Memorial Stadium. They invited me on a special visit after hearing about my story. We were lucky enough to see a 4:0 win against Blackpool from some amazing seats. I mean the view from up there was second to none but also the comfort was something else. Thank you so much to everyone at BRFC for embracing hidden disabilities and inviting us along. I even got to meet 2 of the players when they for popped in to have some lunch with us pre-game. It was a fantastic experience that I’ll never forget. Very tired after though... slept all of yesterday. Check out my pics on Instagram.
24th February 2019
Actually went out today and it was lovely! We went to The Lock Keeper for an hour or so and I had a Coke in the sunshine! Was so nice to be awake in daylight hours for once. Apart from the crutches I felt 'normal' for a little while. I know yesterday was a nice day too but I missed it. My head was too bad to even open the blinds in the bedroom. I'm trying to make the most of the good days.
19th February 2019
Set up my 'community transport' today so this will be a huge help. They're going to provide door to door lifts to my appointments when my mum is unable to help. Also got a text confirming that DWP have receive the report from my Face-to-face assessment for PIP... now got 4-6 weeks to wait for a decision! Eeek
I've decided to take part in a research project for people with 'rare diseases'. It's called the RUDY study by University of Oxford. Seems to be mainly filling in questionnaires online. Not sure if it's something other people might be interested in getting involved in?
17th February 2019
Go Live Day!!! So today's the day I published my blog for you all to see. I have no idea how I go about getting 'followers' ... but I guess it's something that will grow over time. I've sent it in to EDS Support UK as part of Rare Diseases Day on February 28th, and I've sent it to 'This Morning' because I really with the meet Phil and Holly. Other than that I guess I'll let Facebook do the talking.
Also got my 1st donation on my 'Just Giving' page. Thank you so much.
** edit - so lots of my friends have been saying how proud they are of me for sharing this... so I thought I'd share my reasons with you too. It’s got a lot to do with the fact I’m going have to go back to work soon. Potentially with crutches (or a wheelchair) so I don’t use all my energy up walking in pain. And I’m not sure people at work even really know what’s wrong with me. And I don’t know how to tell them. It’s not like I’ve got stuff people know about. So I thought maybe this way I could kinda tell everyone, without telling them, if you know what I mean. So that everyone’s more aware of the ‘other days’, without me having to say. Cos at the moment I feel like people only see the ‘me’ I want to show them. And I feel like the best god dam actor ever... but it’s working against me, cos I can’t keep it up forever. I'm too tired! And that's not the real me anymore :(
14th February 2019
Been really struggling with symptoms this week especially (had my 2nd PIP face to face yesterday) ... I started Prednisolone on the 29th at 25mg a day with the plan to decrease by 5mg a week and stop. I didn’t manage to decrease at all as the ulcers and pain just wouldn't let up. Called them Monday and Tuesday. They called me back yesterday and bought me in as a day patient today. Had a long chat with a Rheumatology Reg and decided a high dose Methylpred “pulse” today. Then start Azathioprine tonight and do 1 more week of 25mg Pred and try again reducing by 5mg a week next week. At least we have a plan ...
10th February 2019
Fatigue has got to be one of the most frustrating symptoms... all I intended to do was have a shower (to wash my body, shampoo my hair, AND shave my legs) but it’s gona have to be a '2 part-er'. Yeti legs for one more night! Gota laugh or I’d cry.
* Guess I wasn't successful on the modelling front [Sad Face] Boo-hoo!
3rd February 2019
Colonoscopy tomorrow... insanely nervous!!! Bowel prep starts in an hour.
27th January 2019
Oh my goodness ... I’ve applied to be a model with Zebedee Management! They're a "specialist modelling agency, passionate about redefining the perception of beauty, disability and diversity". They believe that "with the right opportunities and support amazing things can happen to amazing people". I hope I'm one of their 'amazing people'! No harm in applying right...?! Will know if I've been successful by the end of the 1st week of February. I'm not holding my breath but my fingers and toes are all crossed - thanks hypermobility lol.
18th January 2019
Do you have a bedside table fit for a princess (or prince) or a pharmacy? Here’s mine...
Annoyingly some of my tablets come in boxes I just can't open so every few weeks me and JW spend an evening topping up my supplies. Got so many things to remember now I've got alarms on my phone for when to take what.
28th December 2018
I think I pushed myself too much on Christmas Day. I haven’t got out of bed since except to eat and toilet. I need to shower but I can’t stand up that long and if I get into the bath I’m not sure I’ll get out again. I feel so weak and everything hurts. It’s not just my joints but my muscles. And my bowel is really playing up. I don’t want to eat. I’ve lost so much weight. I’m too tired and in too much pain to get to the kitchen anyway. But when I do try and eat my mouth breaks out in massive ulcers and my tummy hates it and within a few minutes it’s coming back out anyway! Had another toilet accident - lets call them "Christmas Candle Incidents". I’ve got large ulcers all around the edge of my tongue at the moment and one underneath. The other morning I woke up with blood all over my pillow. My migraines are still horrendous. Still regularly vomiting. I can’t wait to see a Neurologist again.
18th December 2018
I’ve never been so embarrassed. Today was the first time I’ve needed to ‘open my bowels’ and I haven’t made it to a toilet! It’s my partner’s birthday tomorrow and I’m scared to leave the house. I had no warning. There I was browsing the Christmas Candles and next thing I know it's coming out. What are you supposed to do? I dropped everything (including my beloved 'bag-for-life'), rushed to the car and came home to clean up. I’m 27. This shouldn’t be happening to me. Gona have to give that particular store a miss for a while and do some Christmas shopping elsewhere ...
11th December 2018
The GP going to contact Neurology, Endocrinology and Rheumatology because although I left messages with them I haven’t been offered any appointments. I was supposed to be seen by rheumatology in Bath in November (as a routine follow up) but that hasn’t happened. He also thinks I should start Methotrexate again as my mouth and throat ulcers are so bad and are continuing to get worse. I’m struggling to eat and drink and have lost just over 2kg in 10 the last days. I’m still vomiting all the time from my migraines.
He said we’ve exhausted all options at the GP surgery now and we’re out of options and need specialist help. He’s also making another referral to Gastroenterology and chasing up the one already made by Bath in January. We’re reducing the Topirimate back to the original dose again cos that hasn’t done anything apart from upset my balance.
7th December 2018
I’ve had a large ulcer at the front of my tongue for over a week now. It feels like it’s starting to heal although it’s still very painful. One of the edges is peeling. Unfortunately 2 more ulcers are just starting to appear further back. One of them is particularly deep and bleeds at night. I don’t know what to do. My mouth is hurting so much I just don’t want to eat. I’m vomiting from my migraines so that won’t be helping either.
5th December 2018
My mouth is so painful. The ulcers on my tongue have joined up to be one the size of a 50p. I can’t eat. It hurts so much I just want to cry in bed. I’ve been drinking milkshakes while my partner is working but I’m losing weight and I’m so tired. I know I should eat but I just can’t face it. I’m in so much pain. I can’t do this any longer.
22nd November 2018
I have Behçet’s, Hypermobility, Raynaud’s, Hyperhidrosis and Chronic Daily Headache (?Chronic Migraine) and I’m really struggling. What do you take for pain relief (mainly for headaches but also muscular-skeletal pain). I need to get back to work but I just want to be in bed in the dark cos my head is so bad. My GP basically told me to get used to it but I’m not ready to accept that yet. There must be a way to not have a headache - or at least have a lesser headache
16th November 2018
Been off work sick since Friday with this god dam headache. Upped my Topiramate yesterday so maybe that’ll start to do something soon. They think it might be chronic migraine. I’ve done some research and unfortunately, in many cases, current therapies are not enough to prevent or reduce the impact that chronic migraine has on people’s lives. This can lead to sufferers frequently becoming depressed and unable to cope… I guess that explains my low mood… might be time to think about a PIP application again. I feel super sad and I feel like overall I’m getting sicker and experiencing significantly more time absent from work and social activities.
14th November 2018
I tried going to work but I couldn’t cope. I lasted less than an hour. I cried at the sound of the traffic whilst waiting to cross the road. My head is my main pain but everything else hurts too. I feel helpless and I don’t know who to turn to.
12th November 2018
Today I couldn’t go to work. I’m scared I will lose my job. I couldn’t shower, or even brush my hair. I haven’t showered for over a week. I’m so tired. Everything hurts. I need help. I can’t do the things I want to do. I couldn’t make my own meals or drinks. I feel useless and completely dependent on my partner. I’m not me anymore.
9th November 2018
I have a huge headache. My limbs feel heavy. All my muscles ache and my joints are stiff. I have a mouth full of ulcers. And I don’t know if I can get out of bed today (let alone get into work). Don’t know if I should phone in sick. But I don’t know if I have any sick days left before I get called in for a meeting. This illness is stealing my life.
22nd October 2018
So this is my arm this evening... should I cover it or not cover it?? I believe I’ve reacted to the plasters as well. It’s quite tender to touch hence why I wasn’t sure whether to cover it.
16th October 2018
I think I’ve got an ulcer in my belly button... feeling very sad and worried. Haven’t experienced this before. It hurts!
5th October 2018
Feeling very tired, itchy and achy. Struggling with walking.
27th August 2018
I’m home and exhausted. The A&E wait time was 6 hours + (I was in and out in 2). I have an inner ear infection that is causing my heart to jump in and out of SVT. If I experience it again (with symptoms) I need to go back to A&E. If I experience it again (without symptoms) I can stay at home. The elevated baseline heart rate is most probably caused by medications. I’m seeing my GP on the 6th September and the A&E doctor is going to write to him to request a 7 day tape with a cardiologist to investigate.
3rd August 2018
I feel unwell. I can’t put my finger on specifically what. But I’m not right. I’ve been off work sick for 4+ weeks. Returned on Monday so just coming to the end of my first week back. It’s been tough
27th July 2018
Sleep study night to see if I have sleep apnoea. How am I supposed to get any sleep with all this on...?! I have the saturations monitor on my wrist with the probe on my finger. Then the co2 monitor and respirations counter on my chest connected to the 2 chest straps and the nasal cannula. It is not comfy. I think the results will be negative on this test for 2 reasons … 1) I doubt I’m going to sleep and 2 I don’t feel tight at the moment. But I get ulcers at the back of my mouth and throat and when I have them bad I think the results would be worse. Shame they’re doing this while my throat is clear.
23rd July 2018
So... I fell out of a car today! I’m fine but I want to share the story with you, because, well, I fell out of a car!
Basically I want to Pre-War Prescott. An event day where all the old car owners get together for a big picnic and drive up the Bugatti hill climb track. And you can attend as a visitor and attend a safety brief and then ask the owners if you can ride with them in their old cars up the hill climb. It’s brilliant. Mum took me as a treat cos I've been feeling so poorly, and I had a fantastic day. I rode in some fantastic old vehicles. Unfortunately, during one of my rides in the afternoon, on the hairpin bend the door flew open, and I flew out. It felt like slow motion for me. I felt the door open. I felt my self sliding out on the slippy leather seats. I thought about trying to grab something but there wasn’t anything and I thought I made a decision to get out. In slow motion, I didn’t think we were going very fast. In reality it must have all happened so fast (my mum was in the back seat of the same car). We were accelerating out of the hairpin as you'll see in the video. I don’t know how I managed it but as I fell I put both hands on the tarmac and realised how fast we were going and realised my left leg was stuck. I somehow simultaneously pushed off the road with my hands, and pushed with my right foot to free my left foot. Leaping like a frog, landed on my hands and feet again on the tarmac as wide as I could cos I didn’t want to roll cos I only had a strappy top and thin trousers and I didn’t want to rip all my skin off. I turned over on to my bum and just sat there. Legs our straight, hands by my sides, car half way up the road. I took a deep breath, ready to scream in pain and cry. In my head I thought I would have broken arms, a broken leg, no skin on my hands. Holding my breath I looked at my mum still in the car, she looked terrified. The marshal screamed at me not to move and radioed for the ambulance. And then I breathed out... I wasn’t hurt! I mean I had a tiny cut on both palms, a tiny cut on my finger, I got a small friction burn on by ankle where my foot got caught in the car, and a sore foot. But overall I wasn’t hurt. Everyone at the event was brilliant. They dealt with the incident perfectly. At the end of the day accidents happen. It was no-ones fault. They’re old vehicles and the chassis do warp on tight bends and occasionally this causes door catches to fail. This is what they are putting my incident down to. The person I feel most sorry for is the driver. It was his first time at this event, it was his first time taking passengers, and it was his first accident (He’s normally a professional racer). He was beside himself. I doubt he’ll ever attend an event like this again.
This evening my foot is hurting (probably bruising and soft tissue damage) and the muscles in that leg feel over stretched. Oh and I've realised I spent the rest of the day with a hole in the bum of my trousers that no-one mentioned... But considering I fell out of a car on a hill climb racetrack I feel so lucky.
10th May 2018
So today was pretty pointless. Went to the center of excellence in Birmingham. I went in with a list of stuff. And most of it I was told wasn’t Behçet’s related. I have a new diagnosis of Raynaud's Disease. And hypermobility but I’ve almost grown out of it and that causing the joint pain not Behçet’s. The constant sweating they can’t explain. I need to see an endocrinologist. And the headache I’ve had since November 2016 isn’t Behçet’s related so I need to tell the neurologist. And the bowel issues could be Behçet’s related but I need to see a Gastroenterologist to confirm it or offer a new diagnosis. At least my eyes are okay.
I’m really sad. I feel like I’m back at square one. For 18 months I’ve been told the headache is Behçet’s related and to wait for this appointment. Now I’m told it’s not.
20th April 2018
I was off sick Monday-Wednesday. Back at work Thursday and Today. Just feeling so tired all the time. Don’t really know what I can do about it
13th April 2018
I’m absolutely exhausted. I just want to be in bed but unfortunately work has to take priority.
11th April 2018
When I have ulcers I really snore. Also if I take pain medication I really snore too. I wake up all the time. I have night sweats. I have a constant headache. I went to the GP today as I think when I’m unwell I get sleep apnoea or hypopnea. He said I only score a 10 on the sleepiness scale (how likely you are to fall asleep in situations) so that’s normal. But I think I score low because I’ve gotten used to being tired all the time thanks to Behçet’s so I don’t randomly fall asleep anymore because I’ve trained myself to stay awake tired. What should I do now? He won’t do a referral to a sleep centre. Should I talk to the specialist center about it next month or accept his opinion that I’m fine and just let it go?
6th April 2018
I have a cold which is making me super tired all the time on top of my normal Behcet's fatigue. But I finally have some dates for appointments. I’m seeing my GP on the 11th about possible sleep apnoea, then next month I’m going to the CoE Birmingham on the 10th for my first visit (nervous - don’t know what to expect), going to see my consultant in Bath on the 14th, seeing the neurologist on the 15th about my headaches, and seeing oral medicine on the 16th for a follow up about ulcers. Excited and nervous and pleased that stuff is finally getting done. Being chronically ill is a full time job in itself!
14th February 2018
So I discovered on Monday that the neurology referral that they assured me was done in November, hasn’t been done yet. And it’s a 16 week waiting list. I’m so cross and upset that I’ve been lied to by them and that their lying has delayed my treatment by at least 2 1/2 months. I have asked for the neurology referral to be done for real this time. And I’ve asked for a referral to Birmingham center of excellence so we’ll see if they can manage either of those
12th February 2018
So in November 2016 I started having a constant headache. Since then I’ve been fighting for a neurology referral. They’ve kept making me try other medicines and have additional scans before they would do it. Following an MRI scan (over a year after I asked to be referred) I was told by my GP’s reception on 2 occasions (Dec 2017 and Jan 2018) that the referral was done. Today I saw my GP and discovered it’s still not been done. I don’t know what to do. The waiting list for neuro in Bristol is 16 weeks and now I’m joining the bottom of the list again! I’m struggling so badly. The people at the hospital don’t seem to know what they’re doing either. They stopped my methotrexate and said they’d review me in 2 months. Just 2 weeks into the 2 months I’m struggling with ulcers, pain and fatigue. My GP has promised that today he will do a neuro referral and also a referral to Birmingham CoE. But I don’t know how long that will take and I don’t know how long I can keep on going as I am.
11th February 2018
I’m running on empty. I went to the hospital a few weeks ago for my follow up and they agreed methotrexate isn’t really working for me. So they stopped all my needs and will review me in 2 months. I’m aching, and covered in bruises, and tired, and ulcery and generally miserable. I just wanna sleep all the time but I’m trying to get fit and hold down a job. I don’t know how long I can run on empty for though. I’m going to my gp tomorrow and I’ve printed out all the info about being referred to a centre of excellence.
7th January 2018
What do you do when you "just can't"? On Friday I was off work sick with this god dam headache. Saturday was okay. Today the headache was bad but we went for a walk to get some fresh air (I hadn't been outside since Thursday). After the walk I'm shattered. Mentally and physically drained. My headache is at a peak again. My hip and knee didn't like the walk and are telling me loud and clear. I've been lying alone in a dark doom since 8 cos I just don't know what to do. I've been fighting every day to maintain a job and a life. And now I just feel like giving up. Everything is hard work and for what? To feel like this again... I have a rheumatology appointment on January but I don't know how to explain how I am when they ask 'how are thing?' And I know I'll probably say 'fine' like we all do. But everything's not fine and I need help.
19th December 2017
Need to ask some advice. What is the best way to go about getting a wheel chair...? I don't need it all the time. But at the moment I'm really struggling and I'm repeatedly finding it difficult to borrow one. None available at 2 different Tesco's (Bristol had lost the keys to unlock them and Kidderminster didn't have self-propelled and the electric doesn't charge). Issues at the Bullring shopping centre - I booked a free one and then they tried to charge me. And no shop mobility anymore in Worcester. It would just be easier if I had my own in the car. Thanks
*Edit: I don't need an electric one, or a scooter. JW or mum can push when I can’t. I would like self-propelled though for when I am on my own.
29th November 2017
So I've now had a headache for over a year... and today they are finally doing an MRI (& MRV) scan. I've got mixed feelings about what I actually want from this. I mean on the one hand if there is something they can fix, that would be great, but also would mean there's something wrong with my head. On the other hand if they don't find anything, how are they gona stop the pain?! Feeling nervous. My next rheumatology appointment is January. I think that's when I get the results.
8th November 2017
So I've had a headache pretty much every day since November 2016... I've just had a busy week off, so yesterday I had a relaxing day before returning to work today. But then today, despite my rest day, I've woken up with a horrible headache. Stupidly I took normal paracetamol in the hope of getting into work (I can't drive on my strong painkillers) but it hasn't touched the sides. So I've ended up calling in sick now anyway cos I can't get out of bed, and because I took paracetamol I can't take the strong painkillers till midday. That's soooo far! Why do I feel so rotten today when I gave myself a rest day!? Frustrated doesn't even come close. I'm on methotrexate so I can't take ibuprofen. I've talked to everyone about my headache and no-one cares. They've given me Co-codamol for pain relief and Propranolol and Amitriptyline to try and prevent them but nothing works. I don't feel like the methotrexate has helped anything. The main reason for starting it was the headache and joint pain. But last week was my worst for joint pain. I still don't have a neurologist. The GP keeps telling me they're tension headaches. They're not. I feel like everyone only looks at a small bit of me. The physio is at the BRI and only looks at my hip by my whole body hurts. The mouth ulcers are looked at by oral health at the dental hospital. The headache is being managed (apparently) by the GP. And then the Behçet's it's self is managed in bath at the Rheumatic Diseases hospital. I'm fed up. I'm struggling with working but I can't afford to do less hours. I have to keep pushing despite making myself sicker.
3rd October 2017
Pie tasting at Bristol Rovers Memorial Stadium. Had a brilliant evening eating all the pies and I made it onto the local BBC news. Haha!
23rd September 2017
Went to the filming of "The Great British Bake Off: an extra slice" this afternoon and I made a pavlova. I packaged it up really carefully with bubble-wrap in a cake box, and kept it cool in the car. I then looked after it all morning on the tube and in the queue outside. I was really pleased with it and the people there seemed impressed with it too. And then we got inside and they took it off me and I assumed it was going to be displayed somewhere lovely during the filming. But no. I didn't see it again until the end of the filming and when they gave it back it was a big ruined melty mess. Goddammit! Never mind. The experience of going to a 'live' filming was fun but I'm not sure I'd go again. Spent a lot of time sitting on the floor as they tell you to arrive early but don't provide chairs.
17th July 2017
I tried going back to work on Children's Intensive Care but I couldn't do it. The rules were that I had to stay away from 'infectious' patients, look after 'small' patients that wouldn't require extensive manual handling, and look after my self by taking my break appropriately. It didn't work out. Within a couple of days I was knackered and in A&E getting IV antibiotics for an infection. I've applied for (and got - on medical redeployment grounds) a job in clinical audit and it's my 1st day tomorrow. Eeeeek! I’m so sad to be giving up nursing but hopefully this is a positive step. I will have flexible hours, Monday - Friday and guaranteed breaks. Fingers crossed this works out as my 1st application for Personal Independence Payments was rejected. I didn't get enough points to get any help and now I have a new job I'm not going to fight it.
5th July 2017
I hate the dentist. So, I've gone my whole adult life with no teeth problems. Then 6 months ago I went to the dentist and needed a filling. Today I had my next check-up and I need another filling. He said he can see I do a good job of cleaning my teeth but for some reason the back ones are going soft. He said that BD can be very hard on the teeth. Now being referred to the dental hospital for help. Feeling very sad and scared. I can't afford loads of dental work... but I definitely don't want no teeth.
29th June 2017
JW and I are going to be on a new game show called "Don't say it, Bring it" and we won £500! Think it will be on Dave in around November Time. You'll have to keep a look out for us. JW did all the running around while I just stood there (It's Methotrexate Injection day on Wednesday and I barely have the energy to walk on Thursdays)... but I helped lol!
17th April 2017
Just collected my piggy bank. Super pleased with how well he's turned out. Now to fill him up with 5p coins ... I wander how long it will take!
7th April 2017
Was great to meet some of the group members today from the to "Bristol ME/CFS, FM and Lyme Disease Friendship Group" and "Invisible Illness Bristol (meet up group)" at my pottery painting event at Flying Saucers Pottery Painting Cafe. Shame more couldn't have come but I totally understand, our illnesses are unpredictable. Looking forward to picking up our creations.
31st March 2017
Occupational health said I'm still not fit to return to work. Feeling super sad.
16th March 2017
I keep falling asleep today and it's getting really annoying... 24 hours post methotrexate injection. Got such a headache, achy joints, loss of appetite, itchy and pink injection site (from last week - this weeks is fine), tummy ache, genital ulcer, sooooo tired. Achieved nothing yet today. Just keep sleeping. I can't even get downstairs today and my partners at work. Can't wait till he gets home. Would love a cup of tea or even better a strawberry milkshake
25th February 2017
I've definitely done too much these last few days... and it's all caught up right about now. Everything hurts. My head feels too heavy for my neck. My insides feel sloshy. And I'm tired but I can't sleep. I feel sad on the inside, like I’m on the verge of tears all the time.
20th February 2017
I just wanted to let you all know I got an email today saying that my application for a blue badge has been accepted. I've paid my £10 and it should be on its way soon. So happy. I needed a bit of good news!
19th February 2017
I have swallowed my pride and applied for a blue badge, mainly due to joint pain and fatigue (getting from the shops to the car carrying shopping is hard work as I'm sure some of you know) and also mobility because on my bad days I use crutches. I called up to check on my application and the council said they're not sure I meet the criteria. Bit of a blow! They're Gona contact my GP again even though they have already written me a supporting letter. Just feeling a bit sad cos I'm struggling along and all I asked for was to park a bit closer. Why isn't Behçet's recognised like other chronic illnesses?! So frustrating. They tell you to ask for help when you need it but who do you ask when no-one listens?
13th February 2017
So I've had my appointment this morning with the rheumatologist. It went well I think. I'm starting methotrexate injections. I've tried the tablets before but they made me feel sick and I kept getting tonsillitis. Just waiting now for my set up appointment to learn to inject myself etc. That's a scary sentence. Worrying now though because being put on immunosuppressive meds means I can't go back to work in children's intensive care cos of the risk of infections. Don't know what I'm Gona do... I'm an intensive care nurse, it's what I love, and I've been off sick since November, and already and I miss my work. Occupational health said I could maybe work in research or something but not patient facing. Decisions... anyway time for some rooftop spa relaxation to think all this over.
10th February 2017
Having a super achey week. All my joints are clicking every time I move. But I hope it's about to get better ... going to Bath Spa. I don't know if you've ever been but it's beautiful. It's got a hot steamy pool on the roof and in this frosty weather it's going to be perfect! Can't wait.
19th January 2017
First time going shopping in a mobility scooter… and it’s actually quite fun. I’m sad that I’m struggling so much that it’s come to this, but I’m happy that there is help out there. Got my self stuck among the coats in New Look, much to my friend's amusement.
3rd December 2016
I've had a headache in the back of my head for 10 days. I'm already feeling very fed up! It's really bad, worst at night, sometimes makes me sick in the morning, and just makes me wana do nothing. I've been to A&E, GP and Hospital. Had CT scans, blood tests and lumbar punctures (OUCH!!) and nothing has been found. Slightly sensitive to light, not sensitive to noise. I want help getting this diagnosed and sorted. Hope this doesn’t last long.
