Friday 13 September 2013

Eye emergency, WRAG appointment and first Healthy Minds counselling session

Heyy, I think this is a bit of an updating blog post again. I'm absolutely exhausted from all these appointments and I have more to make! Blah.

Ok, first one,

Eye Emergency:

I wear monthly contact lenses about 2 or 3 times a week. When I first got them, I was told eye drops weren't needed unless my eyes got too dry. I didn't have any problems up until Saturday night. A couple of hours after I took out my contacts (carefully and very hygienically might I add) I had some irritation in my right eye. It only felt like a little scratch and, when I checked in the mirror, I couldn't find anything. I went to bed and slept soon after that.
I woke up at around 4am on the Sunday in absolute agony. My vision was very blurry, I felt like my right eye had been wrapped in barbed wire and it burned like it was on fire. I also could barely open it because it was all red and swollen. I woke my parents up to tell them and they said it might be severe conjunctivitis and to try and sleep, then we'll see what it's like in the morning. I spent the rest of that night, tossing and turning with a cold wet flannel on my eye, trying to soothe the pain as much as possible. Needless to say, the pain hadn't subsided and I was screaming out in pain. Dad took me to A&E.
Because it was an eye emergency, they got me seen to as quickly as possible and I was told I had a lot of severe abrasions on my eye (my left was fine though) and that it was probably due to my contact lenses damaging them. I had to take 2 types of eye drops hourly and 1 type 3 times a day. It would make my vision blurry as the one type of eye drop was designed to dilate the pupil of the affected eye. It's still quite blurry now but not as bad as before. I had to wait until today to write this post because of the blurry vision. Having it constantly made me feel really disorientated, dizzy, nauseated and generally feeling ill. Luckily the damage isn't permanent and the scratches are pretty much all gone.
When I went for my follow up appointment yesterday, the Opthalmologist told me I had permanent white marks on my cornea as well. This was due to a virus I'd had (no idea what virus it is, but there you go!) I could've been prescribed steroids to get rid of them, but I'd be on them for life. I decided against this as the marks were purely cosmetic. They don't hurt or affect my vision so I don't want to be on even more medication; especially not steroids!

WRAG Appointment: 

On Tuesday I had my first Work Related Activity Group appointment. It took a while to walk from my dads car to that appointment; as there is no parking nearby. I had to keep stopping as my leg was getting weaker (my right one seems quite weak at the moment) I was getting dizzy, tired and couldn't catch my breath. I think there's some disabled spaces nearby but I'm on the fence as to whether it's worth all the stress and possible rejection to get a blue badge. I know I need one but all these appointments wear me out so much, I just don't know if I have the energy for another assessment.

Anyway, I got there just in time and was taken straight to the advisor. She asked me about my condition, limitations etc then told me straight off that the DWP saw Fibromyalgia as a short term condition so I would not see her again. Short term? Friggin short term? I've had this over 3 years and it has got worse! I don't see that as short term, do you? So she said I had been placed on the Work Programme and was to be dealt with by another organisation. I told the advisor that Fibromyalgia is a long term condition. Once you have it, it's for life as it's incurable. She actually knew this, as her auntie has it, but unfortunately she doesn't have the power to argue the DWP's decision.

I hate having this condition. If I'm going to be this ill for this long, I'd rather have something that is a lot easier to prove through blood tests, scans etc. Why do I have to feel like I'm on trial all the time? If one of the decision makers could step inside my body for a week, they'd know full well what my limitations are, how I never really have a 'good' day, why I don't make regular plans because I can't predict how things will be on a particular day and I hate letting people down.

Ok, so I was sent away after all the admin-y things were sorted. Paperwork given out, being put on the phone to this organisation (with Pertemps would you believe. i.e. a recruitment agency?). I'm on the work programme for 2 years but I think the advisor mentioned I might be reassessed in 6 months as my condition is 'apparently' "likely to improve" in 6 months. Well it hasn't improved within 3 years, so, unless the doctors come up with some miracle treatment, I'm not too optimistic :/.

I had a letter come the other day, called the Invitation to Work Programme. I had a real panic when I read the details! It talked about an induction that would last between 2 and 3 hours. Now when I read the word "induction", I thought I'd be expected to do lots of work-related tasks (office work, filing etc). I was imagining being plonked at a computer and having to do 2-3 hours worth of work! No wonder I panicked. I may be able to sit at a computer for a bit, but I'm writing this sat on the sofa, moving my legs so they don't stiffen, part-dislocate or cramp up and cause extreme pain. I have 2 cushions and a pillow behind me so my back doesn't hurt too much. Even though I have all this, my neck, shoulders, back, hips and legs still hurt and my hands cramp up easily so I have to rest every 10 minutes or so. And this is at home. What office would provide me a very cushioned chair with space to move my legs constantly and no targets so I can rest my hands/arms without severely disrupting productivity? This is part of the reason why I can't even consider basic office work at the moment.

Well after my panic, my mum kindly rang this place for me. It turns out, this induction is more like an interview with an advisor there. The timescale was also an average time because of how busy the building gets. I can now expect to wait up to an hour. This means my dad can come in with me thank god. This is also the limitation I have. I have to have someone with me for appointments, interviews etc. I don't get anxious talking to a person I don't recognise, but I find it hard explaining everything because of my brainfog. I already forgot to tell the original adviser about my leg stiffness and I really hope this new adviser has the atos report. I will bring along my copy just in case. I just really hope I'm not forced to do things like work experience etc. When I feel I can cope with work situations, I will be doing everything I can, but doing too much causes major flares for me at the moment. It's just not worth the risk!
I will keep you updated on these appointments.

First Healthy Minds Counselling Appointment
TRIGGER WARNING: Mentions of suicidal thoughts and abortion. 

On Wednesday I had my first counselling appointment with Healthy Minds. I had no idea what to expect to be honest. I'd been feeling pretty numb recently, trying to distract myself so I didn't think for too long, so I wasn't sure how to explain everything to the therapist. I thought about writing notes, but didn't know what to put, so I just went along and hoped my mind wouldn't let me down.

The therapist was really good. She asked me lots of questions but didn't rush me. It felt more like a chat I guess, although some things were hard to talk about. We covered so much and she kept me informed of everything.

We talked about my suicidal thoughts. I feel so bad talking about this because I end up doing it in such a matter of fact and calm way. I don't want people thinking I'm sick in the head or something. I know it's not healthy feeling this way and thinking about suicide as often as I do. I may not be planning to do anything (although, admittedly, I do come close sometimes) but it's always at the back of my mind. I don't really know how I'd do it. I told the therapist about the methods I've thought of but I was scared about being unsuccessful and ending up in agony in hospital getting my stomach pumped or something. It's something I think of as this option if things ever went absolutely tits up i.e. if I alienated more friends, family and/or realised just how hopeless my love-life was. I feel like I've lost so much already, but I know that I would hurt and upset and anger people even more if I went through with it. As much as I feel like a burden and a shit friend, I'd feel even guiltier if I ended it all. The feelings always get stronger when my symptoms are worse. Feeling sick to my stomach, weak, in pain all over, can't think straight, can't concentrate on a thing, have to cancel plans. When I feel that way, I can't do anything but think and then I have the horrible 'crashes'. It's just that option I think of when I just want everything to stop. If my life will never get better, I don't want that life. My parents go on holiday near the end of this month. Because of the thoughts and crashes and self loathing I have, I worry about being in the house on my own for this long (10 days). I had to just stop hiding it and tell the therapist that I worry about these thoughts and that I worry about getting so low I do plan out ending it all (I'm so so sorry guys, I know this is horrible but I have to be honest here!). I think that worried her to be honest. I don't think I'd do it. I'm not in the frame of mind right now where I would do it. But what if I get to a stage where I don't think about my friends, family, the future etc. What if this 'thought' is all I can think of? She said she wants to see me for an appointment during these 10 days. I think she wants to make sure I keep my moods up as much as I can so I can cope with being alone. She also said I need to try and make plans, have friends over etc. I will definitely try. Believe me, I don't want to have these horrible thoughts. It's just hard to control sometimes. I told the therapist how I rely on distractions.

We then talked about the abortion. I actually shudder when I say or read that word. It just sounds so abrupt and it drips with stigma. I couldn't think straight when I was explaining it to her. I was trying to explain how I needed to get closure and to stop feeling guilty. I feel so guilty and selfish for doing it because I wasn't so ill that carrying a child to full term would be too difficult to cope with. I know people who have had children at young ages and they are brilliant mothers. Maybe I felt like I'd taken the coward's way out? I made the decision so so quickly. I was young, irresponsible (I drank a lot and very often), all I wanted to do at the time was be young, but finish my education and stick to my plans. I wanted to do everything for 'me' I guess. This is why I felt selfish. It wasn't this baby's fault that I wasn't ready for him/her. But I was only 5 weeks pregnant at the time. The therapist asked me "What if you had had the baby?". When I talked through what my plans would be, I felt even worse because I felt that maybe I had made the wrong decision. I've always wanted to be a mother. Hindsight is a real bitch isn't it? It's bringing me to tears pouring my heart out here. All my deepest darkest thoughts out there. Keeping them bottled up just eats me up inside though.

The therapist said that she would refer me to a bereavement counsellor. That set me off again. The word bereavement. She said she felt that I'd never had time to grieve. I suppose I haven't really. I went through all this literally days before my first year exams and I never even told my university about it. I went to my appointments, took the pills that made everything happen and took the strong codeine to help with the pain. I brought my little box of codeine to my exams, sat at the back, held my stomach, grit my teeth and got on with it. I had to throw myself into my studies as much as possible so I couldn't think about this. I had to push every single emotion right down so it couldn't break me.

We then turned to the computer to do all the depression, anxiety and phobia questions again. To see how things had changed since my triage appointment. Beforehand, my depression score was so high that the therapist said antidepressants would have been needed alongside the counselling. Now I am in the moderate/severe depression category. I told her I didn't want anti-depressants because they didn't suit me before. They made it even harder to think clearly and not being able to access my thoughts scared me. So talking therapy it is. We had a look at my anxiety score and I think that one had gone down a bit as well. The anxiety is mainly due to my overactive bladder. I worry so much about situations that do not make it easy to access a toilet. We need to work on this, and I need to be more assertive in those situations. I told her about the lack of a toilet in the jobcentre, and how this made me have panic attacks. It caused me to be sanctioned, as I would get very ill just before my jobcentre appointments and would have panic attacks so bad I couldn't got to any group sessions. And this was back when I thought I was well enough to work!

The phobia section hadn't really changed. I have had a phobia of wasps for a long time. I'm not sure how I got it. I used to be a bit scared of wasps but it didn't affect going outside or eating/drinking outside when it's sunny. Nowadays I will avoid anywhere I can see even just one little wasp. My blood runs cold if one goes near me and I feel really faint for a while afterwards.

Ok so, at the end of this appointment she gave me some 'homework' to complete over the next fortnight. I have to keep a 7 day diary of what I did and how I felt on a scale of 0-8. I also have to write down what I do/plan in those 10 days. She seems really lovely and supportive. She's also sending me some breathing exercises and a relaxation CD as the nights tend to be the worst for me and I want to sleep better/earlier.

I will keep you all updated :)

1 comment:

  1. Be strong Amy, you're doing all the right things. You can get through it. Here if you ever need me. You were there for me when I was a tiny year 7!! Thinking of you and sending hugs xxxx