Bendy pictures and more!

I'm finally going to my doctors' to get a second opinion on the hypermobility. So far, I've been to my GP about my dislocating/partially dislocating left knee (See My Weird Knee post) and she suggested hypermobility. I went again, to show her I had multiple hypermobile joints, my knee was not getting any better and I found places like my shoulders and hips were also partially dislocating. I was getting pain in these joints and I wanted to be referred to see if I could possibly have EDS Hypermobility type. She straightaway said that, unless this condition ran in my family, there was absolutely no way that I could have it. 

I want to come to the doctors with more information, as well as pictures of my hypermobile joints. I've included these pictures below; alongside some pictures of unexplained stretchmarks round my knees. 

The Beighton's score is used to test flexibility in certain joints. The Brighton criteria (including the Beighton's score) helps to diagnose Joint Hypermobility Syndrome though. (source: http://www.arthritisresearchuk.org/arthritis-information/conditions/joint-hypermobility/diagnosis.aspx)

 I'm not sure how hypermobile my knees look. The left one dislocates nearly every time I kneel down.

                                    

 It's not part of the Beighton score, but my spine looks fairly curved in the lower back area. This is where I have the worst pain too.

These last 3 pictures show the strange markings on my thighs and near my knees. I have some faint scars (they didn't show up in the photos) and I think the above may be stretchmarks. The top one is the most impressive!

Ok, so I need to go over the signs and symptoms of JHS/EDS to show the doctor tomorrow. I may edit this post to say why I think I might fit the criteria. Any tips or anything, feel free to comment!

UPDATE

*Sigh* still no luck. This doctor did actually check my joints but decided that I didn't get enough points as some of them weren't quite hypermobile enough. She reckons it is my kneecap that dislocates rather than the joint itself, and my shoulders have more of a bad subluxation than an actual dislocation (even though I have to pop them back in). I just don't know! She's the doctor, so there's only so much I can argue; not having medical qualifications/experience myself. Maybe I just won't be taken seriously until I have a dislocation that I can't pop back myself? I was hoping this would be investigated before that happens (I really don't want it to!)

Thank you for all the advice :)

     

"It shouldn't be disabling"

So, I had my Pain Clinic appointment earlier this week. I'm not sure what to think of it really! I feel I should think of it as a good appointment, but there were parts that I didn't like so much. I'll explain.

Once I'd sat down in her office, the Pain Specialist asked what brought me here today. What a brilliant time for my brain fog to kick in! I'd written down notes but I still managed to miss out half the things I wanted to say. I told her I'd been diagnosed with Fibromyalgia and none of the tablets I'd been prescribed had worked, so my GP had referred me to her. She asked me which medication I'd previously been prescribed, what I was on now, side effects etc. She also asked me what my diagnoses were* and when I'd been diagnosed (I'm sure all this information had been written down on the forms I'd sent her a while back!) and I tried my best to remember. She asked where the pain was, and what kind of pain I experienced. When I was halfway through my list of things that hurt, she ended up just asking me where it didn't hurt (haha). I replied with "errm, my feet?"

(Although I hurt all over, my worst pains tend to be in my shoulders and all over my back. It's a lovely combination of nerve, joint and muscle pain and the subluxing shoulders don't exactly help)

One thing she asked, which I found a bit strange, was what I think caused the Fibromyalgia. Well, I wouldn't know that for sure would I? Are there even possible causes for this? I told her that I didn't really know. I could've had a virus beforehand, as the first doctor I saw thought I had Glandular Fever, even though my glands weren't swollen. I hadn't been in any accidents or had any injuries around that time. I described how my symptoms had started. First came the nausea, unbearable fatigue and general unwell feeling. The pain started a few months on and gradually got much worse and more widespread until I had to stop looking for work because it was making me so ill.

I think she was trying to bring my mental health, at the time I first became ill, into the conversation. She asked how my life was going around that time. I told her that it was alright. I had friends, a relationship that was going well, I was enjoying student life and I loved my course. Mentally, I was ok as well. I was very confident around that time. I got involved with lots of things, had a thriving social life and actually felt quite popular! I explained that it was having the illness for so long, and losing so much, that contributed to the Anxiety and Depression. Maybe it's me being overly suspicious, but I felt she was trying to imply that it was mental illness that was causing my symptoms. I was way ahead of her there. I know 110% that the physical illness came first.

Next, she brought me through to the examination room and asked me to do things such as standing on tiptoes, then heels. I used my stick to help with this so I didn't fall over. I was then asked to try and touch my toes (my feeble attempt showed how much my back was hurting me, couldn't even get to knee height), squat, twist to the left and then right. This felt like an Atos assessment! I thought she'd tell me I'm fine by the end of it! She poked round my back, neck, shoulders and hips. She told me I was extremely tense. I said I was trying to relax, but the pain was very bad. I don't think my shoulders are ever relaxed. Luckily that didn't take very long, and I let her know when she got the tender points. I still feel bruised from it, even now.

She noted I used a stick, and asked how/why I acquired one. (I hate being asked to justify my walking stick, it's not for show! Do you think I enjoy the dirty/weird/pitying looks I get from people?) I quite plainly told her that my mobility had become much worse and, after trying my mum's old walking stick for a while, I bought my own as it helped with balance and took the strain off my hips.

Here we come to the title of this blog post. She said that Fibromyalgia "shouldn't be disabling" and that people with it are never bed-bound or wheelchair users. In any other situation I would've told her straight away, that she was wrong! But of course this was an appointment and I had to be a good patient and listen to the doctor. It was a wild generalisation for her to make! Fibromyalgia can range from quite mild to very severe! Of course it can be disabling! What is her definition of "disabled" then? It must be a very restrictive one. I think I just raised my eyebrows at her and looked at my stick.

I felt I was fighting a losing battle here, but I wanted to talk about the Hypermobility. I said that my GP had found out that I had it, after examining my knees (which dislocate when I kneel down, see the "My Weird Knee/Leg" post) and that I had subluxations and hypermobility in other joints. It hadn't been specifically diagnosed, and the GP hadn't wanted to follow it up; dismissing it as part of the Fibromyalgia. It was causing me a lot of pain in those joints though, and I asked about EDS. Straight away, she said there was no way it could be EDS. She didn't examine me or ask me any questions to see if I fit the diagnostic criteria for any of the types. She didn't even mention the different types. It was just a simple "No, it won't be that. You wouldn't want to have that". I insisted that I really would like my knee investigated, and the specialist told me that I would have to be referred to an Orthopaedic Surgeon. **

We then talked through pain management options. This was the good bit, as she had a few suggestions (not all medication either!). I've now been prescribed Cymbalta (Duloxetine) and will be referred for physiotherapy and acupuncture. She also mentioned pacing (no one has ever properly taught me how to do that, they just tell me to do it) and CBT. I said I was already under the care of a Psychologist, and had received CBT before, so that option was covered. She did say that she wanted to see me again, to see how I was getting on with the new medication. I'm just waiting for a letter about my next appointment.

So, that was my appointment! I wanted to include an account of my psychology session here but I've had to reschedule that. (It was due to be the day after the pain clinic appointment, but I hadn't slept a wink and was far too ill to leave my bed, let alone the house). Next appointment will be my Work Programme one. Oh the joys...


* My diagnoses so far are Fibromyalgia, Vitamin D Deficiency, Overactive Bladder Syndrome, Anxiety and Depression.

** EDS is Ehlers-Danlos Syndrome. I don't want to self diagnose at all. I hope I don't come across as if I am. It is simply that I want the hypermobility and dislocations properly investigated. If after that, a specialist decides it is definitely not EDS then that is fair enough. Frankly, I wouldn't want to have it (it is a horrible condition, with not nearly enough awareness) but I do want answers. I don't believe this hypermobility is just another symptom of the fibro. I do want to get a second opinion from another GP, but I'm hesitant to because so far, no one has investigated properly and I'm not feeling too optimistic about the whole thing. I feel as if it would only be taken seriously if I had a big dislocation that I couldn't put back myself.

Second Bladder Appointment, More referrals and a possible Catch 22.

I've really been putting off updating my blog for a while. My motivation has been rock bottom again and I feel I have to force myself to do anything (including getting out of bed). My sleep routine (if you can call it that) is still awful; which causes a vicious circle with my symptoms: Less sleep --> more fatigue --> more pain --> less sleep etc.

I wanted to have something to talk about.

Ok, so the last two appointments were with the Work Programme and with the Bladder Specialist.

Work Programme

Now that I'm stuck in the Work Related Activity Group, my adviser really wants us to do more to help with my skills. I am in no way ready to concentrate on this when it is taking all my effort just to get up, showered, dressed and eating. But I know that I have to comply. I suppose reasonable adjustments only go so far. At my last appointment, however, I had to let the adviser know that my dad's shift patterns may change to days very soon. I will not travel alone. If I get ill (whether physically or mentally) I want to be around someone I know well. Someone who knows that I have to go to the toilet a lot, I will be in there a while before I can leave the house, I'm in pain ALL THE TIME and travelling makes it worse, I get irritable when things don't go to plan, I get extremely self conscious and nervous in public. So I tried explaining this to her and pushing for phone appointments as confidence on the phone is a skill I need to build up. Apparently the Work Programme doesn't do this though. The best they can offer are taxis. I very rarely take a taxi; especially on my own. If I were forced to attend appointments this way, I'd end up getting too panicked to go out of the house and I'd be sanctioned for not turning up. She also wants me to try informal group sessions. I really don't think I'll be ready for them anytime soon, so I don't want to commit to this and face sanctions if I don't show up.

She told me to find out when my dad's shifts will be changed, and to let her know as soon as possible so she can talk to her manager. We were to have a phone appointment as well. Since then, we've had two phonecalls and nothing much has changed unfortunately. There's a very short window of time after my dad's shift will be over, where I might be able to just make it to the centre, but I doubt I'd ever make it on time because of the traffic. The adviser has told me that the DWP gives the Work Programme providers the rules as to how a customer (what a ridiculous name for someone with no choice) can engage with them. Apparently we HAVE to turn up, in person, every fortnight; although she 'might' be able to extend this to monthly visits. I've explained to her my struggles, and I know she's trying (unless there's something she's not telling me? We're told never to trust anyone who works for DWP or their contractors) but it really is the DWP's decision. So I'm screwed basically!

You have to be pretty damn ill/disabled to qualify for ESA. It is so strict, and the guidelines so restrictive that a person who clearly shouldn't be working (yet) may still be found "fit for work" just because they don't quite fit into those little boxes. Complex and fluctuating illnesses/disabilities are either underestimated or disregarded in the ways that they limit capability for work. For someone sick enough to qualify for ESA, as far as I know, reliability is going to be a tough trait to have. This is purely down to the limitations thanks to illness/disability, and is NOTHING to do with the character of the person. This is NOT their fault; although the government, media, society like to believe it is. And yet, on the Work Programme you are expected to be reliable. You must turn up to the regular appointments and can only phone in sick a few times before a doubt is put on your claim. You must be available for all phone appointments. If you've agreed to a particular work related activity, you must follow it through. If you don't live up to these expectations, the result is a sanction. Now I've already been threatened with one for missing an appointment that I'd never even been told about and with being late to an appointment (when I was having a panic attack). When dealing with physical and mental illnesses, being threatened with loss of your money is HORRIBLE. If I remember correctly, somewhere (on the internet) it said that sanctions were supposed to be the last resort; yet every single time they are used as the first resort. They are used as a punishment to dangle in the face of the vulnerable (I hope that term is correct, please call me out if not) to make sure they toe the line. It is absolutely disgusting and must stop.

I have this really bad feeling that I'm going to be put in a situation where my only option is to close my claim. Thanks to the PIP delays, this will leave me with NO income; so I will be relying on my parents to pay for everything. I don't know how we'll cope. And the saddest thing is that our situation isn't actually that bad, compared to a lot of people. We are lucky because we have a roof over our heads and we can eat. In the UK, in this day and age, that should be the LEAST that someone has. No one should be without either. And yet people are. And yet they are kicked further to the ground, BLAMED for poverty and given little to no help. It angers me so much.


Bladder Appointment 2

This appointment was rescheduled a few times so I was glad when I finally had it. The specialist is absolutely lovely and really gives you the time to talk through everything. At this appointment, we were going through how my fluid intake had changed, and whether the bladder training exercises were working. (See "Just Keep Swimming" post for details of the first appointment). I had managed to cut down my caffeine to one caffeinated drink a day (with the odd "cheat" day) and I didn't have as many citrus drinks, although I did have fizzy drinks. I still had the frequency and the exercises weren't helping to fully empty my bladder however. She also asked me what time I went to bed, what my last drink was/what time I had it. I told her it was usually around 11/midnight and was a milky drink or hot chocolate. Apparently hot chocolate is a bladder irritant too! So this is what I can/can't drink from what I've been told:

Do's:

• Water
• Milk
• Milkshake
• Horlicks
• Decaff drinks
• High Juice (less irritable)
• Cranberry Juice

Don'ts:

• Alcohol (very rarely)
• Hot Chocolate/Cocoa (not at night at least)
• Fizzy drinks
• Cola (Big no no!)
• Tea
• Coffee
• Other caffeinated drinks
• Energy drinks (Even bigger no no!!)
• Citrus drinks (orange juice, grapefruit juice, orange squash, lemon squash, lime squash)
• Blackcurrant drinks

I'm going to have to go cold turkey on the caffeine now. That'll be fun!

Also, due to my problems with flow and retention, the specialist is recommending the GP refers me to a Urogynecologist for tests (possibly invasive ones) and more advice. She mentioned medication again and I told her that I wasn't completely ruling it out, as I'm fed up of my bladder symptoms being at the forefront of my mind. I'm to see her again in about a month's time, and in the meantime I'll have to give up/vastly reduce the irritants and carry on with the exercises. She said it will take a while; especially as bladder problems are also associated with the Fibromyalgia. I did mention the Hypermobility to her as well. My GP had dismissed it as part of the Fibromyalgia, but the more I read about Hypermobility/EDS the more I feel I should really get referred. The specialist agreed I should get a second opinion and push for a referral because hypermobility can actually affect the bladder! Well things are definitely starting to fit into place and make sense now huh! I'm really pleased with this specialist. She listens to me, doesn't dismiss things that affect me and seems to know quite a lot about this stuff.

Appointments coming up:

These will no doubt be the main topics of my next blog post. I have my Pain Clinic appointment at the start of next month and also (good news!) I'll be seeing a High Intensity Therapist for level 3 CBT the day after the pain appointment! So I guess I should start writing down everything I need to talk about with her. I have no idea how these sessions will go, but it is so good to know that my mental health isn't being ignored.

I'll keep you all posted anyway. Thanks for reading!

Am I "triggered"?

TW: Speaking in some depth about certain triggers. Seriously, if you are affected by posts to do with abortion then please avoid this post. I will be speaking in depth and I really really don't want to make anyone feel worse. 

I don't think I'd have been able to write this post if it wasn't for the fact that I'm a little drunk right now. It's not good, but it does help me open up.

I'm still unsure as to whether I should describe myself as "triggered". I have Depression and Anxiety (both moderate to severe) but I am not diagnosed with Post Traumatic Stress Disorder.
I'm not sure if this needs a Trigger Warning in itself, but it is a post where I describe the thoughts and feelings I have deep down when I see posts/status'/articles about a particular subject, so I'd rather err on the side of caution.

The topic that I suppose triggers me (or at the very least, panics me) is abortion. Even the word itself makes me feel a little panicked. I still feel safe (well as safe as I can be) though, as long as I don't spend too much time reading about things. I stay very much away from pro-life comments for example.

I have spoken about it briefly in a previous post, but when I was 19, I had a medical abortion.

I'd not long split up with an ex, when I found out I was pregnant. I wasn't on the pill at the time, but we'd used a condom and, as far as we were aware, nothing had 'gone wrong' as such. My periods were pretty irregular anyway, so it took a few weeks before I'd realised that I'd actually missed one. It took a friend to suggest maybe taking a pregnancy test, just to be sure. It had never even occurred to me! But then again, there's a reason they don't say contraceptives are 100% effective. She was actually really supportive. She even bought the test for me, when I felt too ashamed to. It's ridiculous, I shouldn't have felt ashamed, but society likes to make us feel that way for "getting ourselves" pregnant at a young age. The truth is if anyone (with a uterus, womb etc) is fertile and sexually active, it doesn't matter how old they are or how safe the sex is, they are still just as likely to get pregnant as each other.

I kept saying to myself that the test would be negative; although that little voice at the back of my mind said differently. There were two tests in the pack. The first was faulty (there was supposed to be a line come up to show it was working too apparently, but it didn't), the second came up very quickly as positive.

The next week or so (I can't remember exactly how long) was a real blur. If I wasn't feeling upset, I was feeling very numb. It was as if I was going through the motions, but I wasn't 'really' all there. I was a student at university. I was on a course that meant a lot to me and, as well as focusing on that, I also wanted to live a little. Be an irresponsible teenager for a bit longer, be the confident person I always knew I could be, but being bullied at secondary school really suppressed that. I felt as if my only option was not to keep the baby. I felt I had no choice, I simply wasn't responsible enough. I didn't even try to question that.

After the initial GP visit, I was referred (or given a number for? I can't remember) to a BPAS clinic for a consultation. It was over an hour away, so I needed to find transport there. I didn't want to go on my own so decided to confide in one of my hallmates. She was amazing, I owe so much to her. She drove me to this place and comforted me as the nurse did my scan, confirmed the pregnancy, made sure I was happy with my decision then referred me on to the women's hospital in another city. This one was even further away. This nurse was actually quite nice; which I really needed as I broke down.

The women's hospital wasn't quite as nice. I think I'd rather take a trip to the jobcentre than go there again. It was that bad. Everyone in the waiting room looked so upset, there was a deathly silence in the room and one of the women lay across two seats crying. The nurse called my name. She had a very stern tone to her voice. I didn't like it at all. You'd think there'd be some compassion here wouldn't you? My hallmate and myself followed this nurse to her office and she talked me through what would happen next. From what I can remember, there was no checking whether I was ok (yes, I was crying again. I'm so damn good at that!) etc, just "do this, come at this time, do this, this will happen, then go, here's a leaflet". She told me that, after taking the second tablets, I would be in a lot of pain. She said it would be traumatic. Is this professional? Anyway, it was a fairly quick appointment. I took my first medical abortion tablet, got my second appointment, then left soon after. My hallmate said, afterwards, that she wanted to slap the nurse when she described how I'd feel after these tablets. I wouldn't have blamed her.

The second tablets were a lot more uncomfortable shall we say. Whoever made them must be very cruel, considering where they go. They were hexagonal! Anyway, it took a while to take them. I was shaking, really upset and nervous. The nurse came to ask if everything was ok (that was the ONLY time she was actually nice, she was probably just trying to hurry me up though). After this, I was to wait in the waiting room for a few minutes, to make sure nothing serious happened (yay, more things to turn me into a nervous wreck...). They were satisfied and let me go. I'd only been out of the building for a few more minutes, when things started happening (I won't go into gross detail) and I had to be buzzed back in so I could dash to the loo. The pains started soon after and we had to stop somewhere again. I couldn't make it back to halls, so my hallmate stopped at her parents house and they let me stay the night. I could barely walk at this point. I DID NOT expect to be in this much pain, it was agony.

Codeine got me through the next few weeks. I dragged myself to lectures, did badly on exams but thanks to internalised stigma, I didn't let any of my lecturers, tutors etc know what I was going through, so I spent those exams high on codeine, gritting my teeth and struggling to concentrate. I got through it though. That's got to be an achievement. I can't be that crap then can I?

Although I do know it was technically the right decision for me, to this day, I still wonder. I want to have children so much. There's no medical reason why I shouldn't be able to, but I still have this worry that maybe this was my only chance, and I blew it.

Anyway, back to the point! When I see posts, pictures etc about abortion, these are the things I feel:

• I feel as if all the colour has drained from my body. It's this panicky, anxious feeling that doesn't seem to want to go for a while.
• I want to face it, I want to read the post, but (most of the time) I just can't.
• I feel very upset
• I feel guilty. It's not something I'd think of ANYONE ELSE, just to clarify. This is a completely personal thing. I feel as if I did this terrible thing and I barely even thought it through until afterwards.
• Similar to above, I feel ashamed
• It takes me back to that time, those pains (fibro pains suck, but those particular pains are hard to forget) make me cringe. I can still imagine them and that thought is very prominent when I'm reminded. 
• I think back to what happened, what the nurses said, the scan that I stupidly looked at out of curiosity. 
• It takes over my thoughts. I try to block it out but I can't help having all these emotions and feeling like I can do nothing but think of them. 
• I want to do anything to escape my mind and body. Literally anything. 

Is it a "trigger" as such? I'm not sure. I'd really welcome thoughts on this, if anyone's happy to comment :)

My ESA Tribunal Experience

I'm planning on posting my experience of the whole appeals process for ESA. This may be a good way to raise awareness about the way ESA claimants are treated, how hard they have to fight to get support and also to give an informative account of what happens during this process. I'm hoping that, by sharing my story, I can help (those thinking of appealing) know what to expect.

I have Fibromyalgia, Depression, Anxiety, Overactive Bladder Syndrome and Vitamin D Deficiency. When I had my last Atos assessment, for Employment and Support Allowance, I was awarded 15 points, given a prognosis of 6 months (ha!) and put into the Work Programme as part of my work related activity for the Work Related Activity Group. After realising how much I was struggling with participating, I decided to appeal to go into the Support Group. I will most likely be editing this post to add more, as it is taking a long time. For now, here's my account of the tribunal:

Tribunal 

I'd recently been prepped for my hearing but was extremely nervous. Dad had to drive round for a little while to find the closest parking space he could. We ended up parking behind the building and luckily there was a short cut through a tunnel so I didn't have to walk too far. As we approached the tunnel, I drew Dad's attention to the sneaky CCTV camera pointing towards the tunnel. Very strategically placed; ready to “catch out” us 'scroungers'. I noticed the graffiti next to the camera. “Fuck this” written in capitals, with an arrow pointing to the camera. Welcome to Big Brother.

I'm so glad we made good time for my hearing. I had to stop at least 6 times, although the walk wasn't exactly far. If only the Atos nurse had seen that...

The 15ish minutes I waited for my hearing were the longest of my life. I felt so nervous I was visibly shaking, I couldn't look anyone in the eye, all I could think about was getting out of there. The atmosphere itself wasn't exactly bad. Everyone was quite friendly (unlike those at the Atos assessment centre), I think it was more the anticipation of the hearing itself.

The hearing couldn't have taken more than half an hour? It didn't feel very long anyway. There weren't a lot of questions asked and it was mainly focused upon the descriptors myself and my representative were going for (Mobility, Social Engagement and Exceptional Circumstance regulation 35). The judge was quite nice, the doctor was nice too but seemed more doubtful of my case. They both reiterated that the Support Group descriptors were very strict and I think this is part of the reason why I wasn't exactly feeling positive about the whole thing. It's all about fitting in to not-very-well-explained boxes.

The judge explained that, even if I was worse now, the questions would be based around how I was at the time of my assessment. They asked about my medication dosage and also why I was not prescribed anti-depressants or anti-anxiety tablets for my mental illnesses. I explained that I been prescribed anti-anxiety tablets before; namely Citalopram. I had been on a high dose, and these had actually made my condition worse. I had also been on antidepressants before and these did not work. Although medication wasn't completely out of the question, I would prefer to go down the therapy route. The doctor understood that medication wasn't for everybody and she accepted my answer.

Due to the fact that in my Atos report, the nurse had put that I walked 150 metres from my dad's car to the assessment centre, the doctor had to ask questions about my mobility again. She said that in my original form I had ticked the box claiming I could walk 100 metres. I explained that by the time it got to my face-to-face assessment I realise that I had underestimated how far 100 metres was. I said that I had told the nurse this and that it was in fact only 50 metres I could manage before having to stop because of pain, breathlessness, exhaustion and faintness. What I found a bit strange was that the doctor said experiencing pain was different to affecting functioning. Unfortunately she didn't give me the opportunity to explain that level of pain, when quite high, does in fact affect functioning and is one of the main points for my ESA claim. I also explained yet again that I had to stop at least twice from my dad's car to the assessment centre, but this had not been noted in my report.

We then moved on to the topic of social engagement. The judge said that she had noticed in my report that I occasionally meet friends up town for coffee. I explained that this only happens to or three times a year. I said that my dad always has to drive me there and I have to stop quite a lot of times up town in order to catch my breath and rest so the pain can ease a little. I also explained that we would go to quieter shops and cafés so I was not quite as nervous. Although people are around, I'm able to function slightly better in a quieter environment if I'm with someone and I can focus on them. At this point my representative asked to cross-examine me. She asked me what happens if I'm in a situation where I am by myself in a public place. I said that this never really happens but very rare points where it might I am unable to function properly and I become extremely anxious and panicky.

We moved onto the topic of cooking, and I felt as if the doctor was being quite tricky here. It felt as if she wanted to catch me out? She asked whether I made my own meals. I said that most of the time I needed help and that it was very rarely that I was able to actually cook things from scratch because of pain, breathlessness, dizziness, lack of concentration etc. I said that on my better days I could shove a ready meal in the oven or microwave; and reminded her that this was written in my report. She said that the “cooking from fresh” topic was irrelevant and then asked if I could make myself a cup of tea etc. Of course I had to say “yes” to this, and this made me feel as if she was basically implying that I had no problems with preparing food or drink. She also asked how I coped when dad was at work, if mum was disabled? She (almost jokingly) asked who looks after who. I said that myself and my mum looked after ourselves as much as we could, and that there really wasn't a lot we could do in the daytime while dad was at work. I didn't appreciate the kind of attitude I got from the doctor on this subject. It really felt like some sort of interrogation and reminded me of the Atos assessment.

The doctor then asked me what it was about work-related activity that I felt I struggled with. She asked what the biggest point was that I wanted to make about this. I said to her that the work-related place I had to attend was in a small but busy office. I could not function properly because I felt very self-conscious and nervous in this environment. I started crying as I explained that I couldn't concentrate properly during these appointments and most of the time these appointments were a blur to me. The representative asked to cross-examine me again. She prompted me by asking what had happened at my initial induction into the work programme. (This was a great chance for me to make a strong case for myself).

After taking a minute to pull myself together a little bit I told both the judge and the doctor that I had not been told that my induction would involve any group meetings. When I arrived, however, a group of us were gathered together and taken into a room. I felt very panicky when we were all sat down. The person conducting the meeting started asking us about the kind of jobs we wanted to apply for. I said that this made me feel more anxious as I was in no fit state to work and this made me panic more and burst into tears. I told the doctor that I was taken out the room quite quickly as I was not behaving appropriately I was then shown to my personal adviser and the rest of the induction was a blur. I could only remember being handed a few bits of paperwork to sign.

The representative then asked me what happened when I got home. I told her that I had to go straight to bed afterwards because I was so exhausted and in pain and I spent the rest of the day in bed. I added that this happened every time I had a work-related activity meeting and that even travelling to the place caused me pain and exhaustion. This was part of the reason why I thought I was not fit for work related activity. Thinking back, I could have added that the place only had two advisers who were trained to deal with ESA claimants. A lot of the time ESA claimants were given JSA paperwork and both groups were treated pretty much the same. Unfortunately, there was not enough time and don't think it would have helped much.

Pretty soon after that, the judge brought the hearing to a close. She said that as I had brought so much evidence, they would have to go over this first and would send their decision in the post that day. She said that both her and the doctor would decide whether I fit into the Support Group descriptors from moving around and social engagement. If I did not fit either descriptors, they would consider exceptional circumstance regulation 35 (2) (b) “The claimant suffers from some specific disease or bodily or mental disablement and; by reasons of such disease or disablement, there would be a substantial risk to the mental or physical health of any person if the claimant were found not to have limited capability for work-related activity.”

Each day from the Monday was very nerve racking. I would become incredibly anxious every time I heard the post drop through the letterbox. On 27^th of February I finally got my decision through. I was shaking as I opened the envelope; hoping that I would still be entitled to ESA. I read the first sentence, "the appeal is refused" and my heart sank a little. As I read on, I found out that I was still entitled to ESA, I would remain in the Work-Related Activity Group and also that my points had been amended from 15 to 30. I checked which descriptors I had now been given points in and found that it had been decided that I could only walk 100 metres at a time, I could only sit or stand for up to an hour at a time, social engagement was precluded for the majority of the time and I could only go to familiar or unfamiliar places if accompanied by someone else. This appeared to take into consideration my mental illnesses, which felt a bit of a triumph, because my anxiety and depression had previously been dismissed in the Atos report as I apparently wasn't rocking in my seat and could maintain eye contact with the nurse. Although it is a disappointment that I could not quite make it into the support group, I hope that my adviser will be understanding of my needs. I want to see if my adviser will allow us to just have phone appointments instead of me having to struggle to get to the office on a regular basis. My argument here is that I need to improve my confidence over the phone so this will be quite a useful work-related activity.

Overall, I'm glad I appealed. It took a lot of fighting and a lot of evidence gathering but it has been worth it. I'm extremely grateful to my friends, family, doctors, specialists and my representative for being so supportive and helpful throughout this. I don't know how I would have managed without you all.

Go to sleep.

It's just coming up to 5am and sleep is not happening right now. I should be resting after today, but I've been so fed up of lying around, trying to force myself to sleep, I felt I had to do something. So you're getting a blog post's worth of ranting. Lucky lucky you.

I've been having trouble sleeping for a while now, and it's only got worse. I suppose it's a mixture of physical and mental stuff. I really need a new bed as the springs in this one dig into my back and it's pretty much broken anyway. I think I mentioned this in my last post, but my doctor gave me Zopiclone to try. I find it gives me slightly deeper sleep but it takes hours and hours to kick in so I never end up with an earlier sleep. I couldn't even imagine coping with this whilst working a 9 to 5 job. I don't know how anyone with insomnia manages but I suppose we all push ourselves too far no matter what.

I still get my weird vision things; although atos doesn't seem to believe me. Right now, as I'm writing this post, I'm having weird lines in front of my eyes and big flashing lights. I'm trying hard to focus on the words on the screen because they seem to merge into each other. I also feel as if I'm burning up. With the vision stuff, you'd think this was possibly a migraine coming on, but I've not got a massive headache with it, only a slight one (which I can deal with). This seems to happen nearly every night. But according to atos I have no vision problems, all because I managed to read a few letters (as in letters of the alphabet) on a screen. My vision goes in and out of focus so if I wait for it to go into focus, of course I can read the letters!

It's probably this lack of sleep that is making my lack of concentration more apparent too. Because I barely ever go out and see friends, I'm really trying to stay in touch with them over the internet. I feel bad when I can't cope with a long conversation and have to step away from it for a while. I want to be there for them as much as they have been for me.

Ok, I'll leave it there and try to sleep again. Hopefully the next post will be a better one!

Just keep swimming!

I'm a bad blogger! I've been meaning to write my latest blog post for a few days now, to keep you all updated mainly. I was also very tempted to post my thoughts about the infamous Benefits Street, but I'd probably just be re-iterating what I've said in social media posts anyway. I found it all very triggering. It set off the anxiety and depression BIG TIME. I'm not sure many people even realised this.

I guess that's invisible illness for you. Your mind and body could be SCREAMING at you. You feel sure you must at least look...panicked....? But no one notices. Not in person anyway. I know the odd person who knows me extremely well and can tell when something's up. I wouldn't want anyone fussing over me in person anyway. I never know how to respond to that apart from being annoyed and feeling patronised. To have someone notice and just ask what's up would be ok though.

Here are the updates from Christmas onwards:

GP

I finally completed my bladder diary! And yes, to put it oh so eloquently, I piss like a racehorse ;) I can literally do it on command! I kept forgetting to fill in the diary, so in the end I decided to just keep a notepad and pen in the toilet. I gave the GP examples from days when I had more caffeine, no caffeine, more water, when I was just in the house and when I was out for a while. So she had a good variety to go on, to see if there was anything I was doing that may actually be affecting my bladder.

Next topic to discuss, pain. I've been through all the pills recommended (in the UK) for Fibromyalgia. The Amitriptyline did nothing but make me foggy and slightly help with sleep. I had a very very slight improvement with the Lyrica but this quickly wore off. The Gabapentin turned my brain to mush, made me put on weight and did nothing for the pain. She told me that she would refer me to the pain clinic and in the meantime to wean off the Gabapentin (yay!!!) and she has prescribed codeine and ibuprofen. I'm yet to try the ibuprofen but the codeine doesn't seem to be doing a lot at the moment. I'm going to need an extra bedside table for all these damn pills!

Onto the next thing, sleep. I have barely been sleeping recently! Have tried distracting myself with things like repetitive games, reading, calm music, baths in the evening, milky drinks, thinking about my day even (that used to work) but it did nothing. I recently tried herbal sleeping tablets too but they gave me nausea so definitely didn't help! I explained this to the GP and she has prescribed me a short course of sleeping tablets. I was at the point where I just literally needed something to knock me out. I was surprised it was so easy to get the prescription though. From what I'd heard, this is the last resort and doctors are generally reluctant to give these pills out because of potential addiction. I wouldn't want to be relying on these in the long term but hopefully this short course will get me back into a healthier routine :)

Last thing, mental health team. I explained my worries about being referred back last time, and asked the GP if she knew what was happening with my referral. She told me I needn't worry, as the RAS team tends to pass people from department to department but I will be seen eventually. In the meantime, there's places like Mind and of course I have emergency numbers to ring if I don't feel safe (something I nearly had to do thanks to Benefits Street setting me off. Think before you judge!!!)


Bladder Specialist

I had my hospital appointment, with the Bladder Specialist in the Physio dept, the day after my GP appointment. I had no idea what to expect and I was honestly imagining some sort of group session with everyone doing pelvic floor exercises! Luckily it wasn't that. I saw a (very perky!) woman who asked me lots of questions about my bladder and bowel, was very nice and understanding when I had to nip to the loo halfway through my appt, and gave me some good advice. She doesn't think I have any bladder weakness (although I potentially could damage my bladder if this isn't sorted soon) but it is definitely a physical problem as well as a psychological one. I gave her my bladder diary and she reckons I am sensitive to caffeine. I also have fizzy drinks with citrus flavours in, as well as orange juice and grapefruit juice. I thought these were healthy, which they technically are, but these are also bladder irritants. So I need to cut down and eventually give up the caffeine (*cries!*), do the same for the citrus drinks and have decaff things, cranberry juice, water and milky drinks instead. That's not too hard to adjust to, but giving up caffeine will be tough. I didn't even mention energy drinks!

I also get some bladder retention (where you don't fully empty it when you go to the loo). This contributes to me feeling bloody terrified before a long journey, and is why I spend so long in the loo beforehand. The specialist gave me some exercises to do to help with this. It's basically a case of rocking back and forth and sort of wiggling. It looks pretty ridiculous, but if it helps, it's worth it! No one's going to see me, I bloody hope not anyway!! Ok, so I'll be seeing her next month to see how I've been getting on. Tablets for Overactive Bladder will be pretty much last resort.


ESA

Last time I was due to have a WRAG appointment, I had barely had a wink of sleep and felt extremely ill, so had to get my mum to call and say I wouldn't be able to make it in. I was honestly quite worried I'd be sanctioned but the woman was actually very nice. One thing that surprised me was that she said I should be in the Support Group. I think she's now beginning to realise just how much my conditions affect me (both physically and mentally). It's just a shame she's not the decision maker! Anyway, she said she would contact me with a new appointment, but I haven't heard anything yet.

Not ESA related, but still benefit related, I'm going to finally apply for PIP (the benefit which is now replacing DLA). This is something I should've applied for a long time ago, but up until recently I wasn't sure if I was considered disabled enough to apply for it. I'm of course coming to accept that this isn't all going to just go away anytime soon. I'm hoping my condition improves enough for work eventually but I do need help with the extra costs that come with disability, so maybe I am eligible? I can only apply and see anyway.

I'm sure I was going to write more, but it's gone out of my head now! If I think of anything else, then I will write it in a new post.