Sunday, 12 May 2013

Fibromyalgia Awareness Day

Hi everyone,

I hope people with these conditions aren't having too painful a day today. Although I may not suffer from as much pain as some of you, I can definitely relate to how it feels to have the pain all day every day; whether at a constant or fluctuating severity.

I was trying to think about how I should sort of mark this day. Should I flood you all with posts shared on Facebook? Should I retweet the hell out of Twitter, erm, tweets? I've probably been doing enough of that already recently.  I even thought about getting all creative and writing a poem. Hmm, it's been a while since I've written anything that wasn't just a rant or a ramble so I'm a bit rusty I'm afraid!

Instead I thought I should just talk about what the day means to me, why I think it is important to be aware of this condition (for professionals and non professionals alike) and even try to explain how I personally feel. Ok! So here goes:

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I'd not even heard of the condition Fibromyalgia up until just before I'd been diagnosed with it, and up until that time I'd been told that I 'probably' have M.E/CFS (although doctors never wanted to really diagnose it even after lots and lots of blood tests). I looked up Fibro and found these bits of information: *


  • (From NHS Choices) Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition which causes pain all over the body. Fibromyalgia has many symptoms, although the main symptom is pain. The symptoms tend to vary from person to person and it is unlikely they will ever disappear completely.
  • Symptoms as told by NHS Choices (Not copied word for word however): 

    • Widespread Pain- can be a combination of aching, burning sensations and sharp stabbing pains.
    • Extreme Sensitivity in the forms of hyperalgesia and/or allodynia (hyperalgesia = when you are extremely sensitive to pain, allodynia = feeling pain from sensations not necessarily seen as painful; such as a light touch)
    • Stiffness - Usually happens first time in the morning or when you've been in the same position for a while.
    • Fatigue - This can vary in severity and can come on quite suddenly
    • Poor Quality Sleep - Alongside problems with sleep you can get what's called 'non-restorative sleep', which is basically not sleeping deeply enough to get a refreshing night's sleep (even if you've technically slept for a sufficient amount of time).
    • Cognitive Problems - This is commonly known as 'fibro fog'. This is where you may get confused easily, forgetful and unable to concentrate. People often say they have trouble finding words or finishing sentences because the word/s just sort of  'go' suddenly. Very frustrating!
Ok, so there are a whole host of other symptoms but I don't just want to copy the whole of a medical page when you can just as easily find it yourself. I want to now talk about what this condition means to 'me'. It's all well and good reading up on the symptoms, theories on causes and 'effective' treatments but, unless you actually have the condition yourself, it's quite hard to gauge just what it's like to live with every single day. Words like pain, fatigue and poor sleep never really do it justice because, on paper, they just don't sound very severe do they?

Well let me tell you, dealing with all the crap is absolute hell.

I could quite easily fill one or two pages with all the symptoms I experience. I get blurry vision, shaking, weakness, anxiety, lack of confidence and this horrible feeling of worthlessness and guilt alongside many many others. 

The pain has got worse for me over the years. I didn't notice it as much as I noticed the dizziness and nausea for the first year or so. It was the exhaustion that indicated I should slow it down a bit and even then I worried that I wasn't trying hard enough. I'd always been such a well person who only ever got short bouts of hayfever or colds. I'm not even that sure if I've ever had the flu that bad if at all. I was in university at the time and couldn't even describe how I felt to the doctor (when I eventually decided I should go see him). 

It really really sucked having to miss lectures and quit cheerleading. Because I couldn't explain it properly (and didn't have a diagnosis) a lot of people didn't understand. Even my boyfriend at the time was telling me I would fail my degree if I kept missing lectures and that I'd have to try harder and stop skiving. I'm not even sure some of the people at cheerleading understood either. I guess it's hard to take someone seriously if they can only tell you a few symptoms which don't even sound that serious. I felt like I'd let the team down and come across as lazy. What I wish they'd known was that I absolutely wanted to push through all the ill feelings to do the stunts and the dances but even getting there was barely possible. I would be no use to them all exhausted and disorientated would I?

Well fast forward through that, I managed to get a 2:2 even though I'd not managed to make a single lecture in 3rd year and did all my exams feeling rough as hell. So yeah, I should be proud of that even if it does mean getting onto postgrad courses will be difficult. 

Ok so right now I'm in a lot of pain all over more days than not (of the aching, pinching, burning, sore, sharp stabbing types), on my good days I have mild to moderate pain throughout the day which can suddenly go worse if I move/turn/sit in a certain way. I feel exhausted all the time and suppose I'm actually used to it now. I feel quite weak most of the time and lose my grip on things easily. It's so strange, I can pick up a pen and somehow manage to fling it across the room because my hand wouldn't grab it properly. Being clumsy is so frustrating. Some days I can quite happily laugh at myself and others it pisses me off because it makes me feel useless. The blurry vision seems so have got worse quite quickly; which is extremely annoying when I'm trying to read something important, and extremely unnerving when I'm trying to navigate a shop. I will very rarely walk round a shop by myself now because it gets so bad. 

I'm not quite sure how I'd phrase it personally but, when trying to explain it, I've read things such as 'Imagine having the flu every single day' or 'Imagine having a migraine every single day'. I guess for me it would be like a combination of these things. I don't think you can really 'get' it unless you get it (literally!) but I appreciate people who actually attempt to understand it, even just a little bit. I can't speak for every single sufferer of Fibromyalgia, but you have no idea how much it means just to hear that someone has read up on the condition, or wants to ask you questions about it so they can understand more, or even just wants to know how you're feeling today. To know that someone spared a thought means a lot. 

The worst thing is silence. I've had people I thought I could really confide in, who'd listen to me like I've listened to them but unfortunately that hasn't been the case. They've asked me how I am and then gone silent when I've told them how I 'really' am. Sometimes just saying 'I'm ok thanks, you?' isn't enough when you really need a friend and don't want to pretend you're fine to be polite, or not cause a fuss. Especially when you're not able to see friends often if at all. 

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So, why is it important to be aware of this condition? Well, to get educated about it (especially if someone you know suffers from it), to break the myths about it so barriers to diagnosis can be broken down (it isn't just an old woman's disease you know!) and (very importantly), to help with continuation of vital research into the possible causes, diagnostic criteria and treatments of it. I'm sure there's other reasons, so please comment or tweet me if there's others you want to tell me!

Lastly, I'm no expert, just someone trying to deal with Fibromyalgia and get on in life, but I hope everyone is having a good (or as ok as possible) M.E, CFS and Fibromyalgia Awareness Day. Gentle hugs from me :)


*N.B. Not sure about the legalities with copying and pasting so I'll probably have to cite/reference what I take from other websites tomorrow. Just want to be on the safe side!

Friday, 3 May 2013

Connections

Hi there,

So, not much to report really! I've been filling in some of my ESA50 form. Definitely getting nervous about the next steps. I would absolutely love to work again fairly soon but I know I'm not ready and doing much more than the odd bit of housework (by this I mean washing up once a day and managing to shove some laundry in the washing machine before I'm in too much pain and have to rest again) would set me back a lot at the moment. If I'm found 'fit for work' then I'll have to appeal. I just hope I have a strong support network as I can see my mental health taking a massive hit. I know I'm being cynical but being optimistic never gets me very far.

I had a letter come from the benefits office to remind me to send in a renewed fit note/doctor's letter too as mine's nearly ran out. I'm not able to pick mine up until Tuesday though (which I'll send off same day) so I'm really hoping this doesn't go against me. I intend to follow instructions to the letter so that, if anything does go wrong, I know that I've done everything right on my part. Silly me forgot my doctor's name though. I really hope the same one writes my new fit note as I'm meant to put on the form which doctor writes them for me (At my practice you don't get a specific GP unless you ask to see a particular one).

Also, I have my hospital appointment in a couple of weeks. Really interested to see what he can do for me. If I haven't said before already, I've been referred to a General Medical Practitioner. Does anyone know what the difference is between that and a GP? Do they do more thorough tests for instance? I've been getting more headaches, blurry vision and a new symptom recently. The new symptom is flashing lights in front of my eyes. It gets to a point where I actually think I've seen something out of the corner of my eye and it'll make me turn to see what it is. It's not a hallucination though, nothing like that. Because of these symptoms, I think I'd like to actually have a scan. It does worry me a bit and I don't want it getting any worse. I already don't like to walk around a shop by myself when it's really bad.

I've been twittering a fair amount actually as well. I talk a fair amount to people with differing chronic illnesses such as M.E and Fibromyalgia. It's great to be able to talk to people and not worry about if I'm moaning too much, sounding like a broken record etc. Not that my friends make me feel this way, not the real ones anyway haha. Anyway, it's interesting to hear how people are doing, the lifestyle changes they've had to make, how the docs have treated them/perceived their illnesses, the meds they've been prescribed and other things they've learnt about their illnesses. Plus we can all support each other and know that someone's listening and 'gets' it.

With M.E, in particular, again and again I hear about people having their physical illness treated as a mental illness. Psychiatrists and Psychologists are used in their treatment alongside CBT, anti anxiety and/or anti depressants. When dealing with a chronic physical illness, especially when it's been years and years, there's bound to be some sort of negative effect on ones mental health. I don't believe treatments/therapies for mental illness should be so readily used to treat the physical illness alone and as a whole however. These treatments may be useful if mental health has been affected enough to warrant it but it needs to be stressed that M.E is NOT a mental illness, neither is it caused by mental illness so shouldn't be treated as such.

If you've been reading my blog from the start then you'll know the doctors previously thought I could have M.E (although they preferred to call it CFS grrrr). My experiences of medical treatment around that time are why I reacr so passionately to how it is treated. You'll notice I 'grrred' at the CFS label. It does annoy me that it is continually used. It plays down the illness so much and makes it sound like there's only one symptom, fatigue. How can this label lead to effective treatment?

In my opinion, calling M.E, 'Chronic Fatigue Syndrome' is like calling Cystic Fibrosis, 'Bad Cough Syndrome'. Sounds ludicrous doesn't it? Obviously with CF there are definitive tests (well, as far as NHS Choices tells me anyway) but you get what I mean.

Ok I'll stop before I rant too much :) Plus my arms feel like they're about to drop off and I'm trying to actually listen to my body and rest when I need to. Bye!


Tuesday, 23 April 2013

Decision Letter

Hi everyone,

I've been a bad blogger again but I've been waiting to have a decent amount to talk about that wasn't just a 'woe is me' post. I think I annoy enough people on social networks with that as it is!

I somehow did my hip in yesterday! It was a similar pain to when I kneel down and my knees sort of 'dislocate'. It's not as bad today but I was hobbling about so much yesterday. No idea how I did it. All I did was walk a few feet to the kitchen and it just went. With the kinds of pains I have and the 'grinding' feeling I get with my knee joints etc, I'm extremely surprised I don't have arthritis. My dad has osteoarthritis which is spreading at an alarming rate and I can actually relate to the kinds of pains he describes. Mine are much more ongoing and widespread (alongside the other symptoms) though. I can definitely see why people say Fibromyalgia is similar to Arthritis.

Ok so I sent my ESA application off (with sick note) and received my decision letter yesterday (Monday). I had been accepted! Big big relief as I thought it'd be much tougher than that. If I'm not well enough for work though then what can be done. I'm being honest, transparent and doing everything required of me in the time required.

So today came with a good thing and a bad thing. The good thing is that my first ESA payment has gone through. Contrary to popular politician belief, this does not mean I can laze around, go on holiday and buy fancy cars haha. It means I can afford to pay my bills without getting seriously panicky beforehand. I think I have done really well so far to avoid more than one bank charge.

The bad thing (well nerve racking thing) was that with my payment came the ESA50 form from ATOS that I have about a month to fill in and get back to them. I should probably get a letter or fit note from my doctor again to back it all up too. At least my payment allows me to pay for a doctor's letter if I need to so no real worries there.

I guess I'm just nervous about how the assessment will be. I don't know of anyone who's had an assessment where they felt respected and dignified. I just have to make sure I'm prepared for it. I really hope I get a morning appointment because my dad works afternoons and he'll have to take me. There's no way I could make it on my own as I seem to have lost all my confidence with travelling out of the house alone. All my symptoms get worse especially if where I'm going is crowded.

I think I'll get started on this form tomorrow. I've had a read through today and know I'd at least score 15 points on it. Some of the questions seem very irrelevant to an actual job though. For example:

  • Going up or down two steps: Why the word 'or'? Surely if, in a small office, you need to go up two steps, at some point during the day you'll have to go down two steps. So shouldn't this be 'and'? Also, I don't know of any workplaces that only have two steps at the most. The smallest office I worked in had a flight of stairs and no lift. If you could be situated in the ground floor office that was fine but meeting rooms were upstairs and there would be quarterly meetings (if I remember rightly). 
  • Can you lift at least one of your arms high enough to put something in the top pocket of a coat/jacket while you are wearing it?: I guess you have to check just how bad the disability is but again, being able to do this doesn't necessarily mean you're fit to work. 
  • The Picking up and moving things section: These questions involve carrying small cartons of liquid and a large empty box. In most (if not all) jobs, you would be expected to at least carry a couple of folders of work at some point in your day so these questions seem to underestimate the requirements in the workplace. I understand workplaces have to be accessible and accommodating for people with disabilities but I don't think an employer would be happy to carry things for you if it is part of your role. I think a more relevant question would be "Can you pick up and move a packet of printer paper?"
One thing I'm glad of though is the fact that there is an "it varies" tick box. This, at least slightly, includes the possibility of a variable chronic illness or disability (such as what I have). Also there are boxes to give more information. I only hope that these extra information boxes are read by the assessors/whatever you call them as I intend to fill these to explain the limitations of my illness as much as possible.

Anyway, I need to get some lunch so I should go. I'll keep you updated!

Monday, 8 April 2013

Sheer Exhaustion

This post is half an explanation to my friends, half a bit of a rant about how I've been feeling the past few days (or weeks? I don't remember)

I've had so many things I've needed to do, since moving back in with my parents, and only recently got some of it done. This includes unpacking boxes, sewing up clothes that needed mending for ages, cleaning round the house a bit because mum can't.

I'm really really trying to pace but it's proving impossible. I feel like there's even less I can physically do than I originally thought. It terrifies me that I might actually be getting worse. I'm not dying or anything so I guess I shouldn't be so terrified but it's the ambitions I have that I feel are disappearing into the distance at an alarming rate. I have to stop myself from using the "By now I should have achieved....." phrase which kills me inside.

I also feel so so incredibly guilty that I have become this incapable of doing things. I know it's not my fault. I've not abused any substances, led an incredibly unhealthy lifestyle or got into lots of fights or anything. I just got ill. It's because I'm not the only ill person in my household. My mum has epilepsy and is currently recovering from an operation on her leg that is taking a long time to mend. She's really been through the wars and also has to learn to pace herself in order to let herself recover properly. My dad has arthritis which is getting worse and spreading through every joint it can find. He holds down a full time manual job and is exhausted by the time he gets back from work. I don't know how he manages it. So I feel guilty when asking either mum or dad to help with things such as changing bed sheets, washing up, cooking etc. When I see them wincing (sp?) in pain, although I'm doing the same, I feel incredibly guilty.

I wish we could afford a cleaner or something but it's just not possible. So I have to push myself most days to just get stuff done, otherwise it won't get done. We need clean plates, clean sheets, food on the table etc.

I realise the past few days just how much these things are taking a toll on my own health and energy. I guess you could say I've put myself into 'spoon debt' haha.

It's just got to a point where I'm finding it hard to concentrate on conversations on facebook/twitter/text/phone even and I feel bad because my responses are very lacking or just don't make much sense. I worry about rubbing people up the wrong way because I'm too tired to sugarcoat things either. I'm sitting here close to tears because I'm just so fed up of my body not doing what I'm telling it to do. Or being very slow about it!

At the moment I feel completely out of it, I'm sort of hobbling around in a daze and being forgetful about things. I made a salmon and cucumber sandwich earlier. I kept going to the fridge and wondering why I needed to go there. I'd got the salmon and cucumber out and I needed to get a knife (in the drawer), a plate (in the cupboard), the breadboard and the butter (in the cupboard). I kept going to the fridge to get the knife, what!

I do joke about getting confused sometimes but it is extremely frustrating.

My back is still very bad from when I was last with my partner, helping him put his clothes away. Everytime I walk, or bend, or stretch, or turn, it's like my body thinks it's a bad idea. It's what I'd imagine arthritis to feel like (although my blood tests don't indicate any bone problems) with the wearing away of the cartilage and feeling like your bones are rubbing together and being damaged.

I'm definitely not ready to work again yet am I? Everytime a period of employment has ended, my body has felt worse for it.

Anyway, I must go now and reply to the message I was sent quite a while ago.

Friday, 5 April 2013

Sick Note and New Meds

Hi everyone,

Just keeping you all updated :)

So last time I talked about my meeting at Citizens Advice Bureau to see what sort of benefits I should be applying for. As much as I'd love to get better quick and work soon, it's not really possible, especially if my symptoms keep flaring up!

My doctor had told me to do as much as I can and not limit myself, as ESA would be very difficult to get nowadays. I did try to do more; such as a bit of hoovering and helping my partner unpack some of his clothes. What that resulted in was a real flare up of pain; especially in my back. I was in tears yesterday, it was so painful.

I printed off the ESA form the other day. It says to call your jobcentre and get them to post you the form, but you can print it off the gov website now. My printer didn't know what hit it haha! I think it was about 56 pages long? I'm surprised my cartridges managed to survive lol. Ok so that's done and I'd filled it in as much as I could over the past couple of days. The part asking about medical certificates confused me because it talked about needing a certificate from the 8th day of your illness? Well if I took that literally then I probably hadn't even seen a doctor about it after 8 days back in 2010. It took a while for me to give up and go to the docs as I'd never been ill for so long before. Anyway, I digress. I decided to get a sick note from the docs at my next appointment now I've had this Fibromyalgia diagnosis.

I was actually really worried that it'd be difficult to get a sick note as my doc had told me not to limit myself. I know how I feel physically though and I'm definitely not ready for work just yet. I can't say when I will be ready either, I guess it'll just be when I'm on treatments that work and am seeing the correct specialist. My referral seems to have flown out the window though! I did ring my old doctor's secretary the other week and he'd 'forgotten' to do the referral. Still nothing from this TRAQS place so I'll try again next week and if there's still nothing then I'll just leave it. According to fellow fibro sufferers, I talk to occasionally, I should be referred to a neurologist or rheumatologist because of the types of pains I have. Docs I've spoken to have said that Fibromyalgia doesn't call for a particular specialist though. I don't have the energy to argue. As long as I get the right treatment I'll be happy!

I'm rambling again. Ok! So I had my doctors appointment earlier today and I (sort of) prepared what I needed to say to her. Basically, reminding her of last appointment and what she advised, telling her I took her advice and relapsed, explain why I feel I'm not ready for work yet, ask if she could do me a sick note, say about Amitriptyline not working for me and mention about not hearing anything from referral.

Luckily I remembered all that and explained. Now remembering about her saying (at last appointment) that I should do as much as I can and not limit myself, I thought she might say no to doing me a sick note! In hindsight, I think this is me being extremely cynical (a learnt trait). But no! There was absolutely no problem getting it and she even asked me how long for. I'd heard somewhere that a month sick note was acceptable for ESA. I hope I didn't get that wrong. She also has changed my meds to Pregablin and will look to prescribe me strong painkillers if needs be. I don't want to be too doped up on meds so I didn't ask for them as well. Will just see how I go on these. Also, she will look to refer me if my referral still doesn't come through (I don't hold out much hope tbh!)

So, altogether a pretty good day! I've filled in my ESA, included my P45 (looking at the date on this, I'm now technically "long term unemployed" blah) and sick note and posted it off. I'll just have to keep my fingers crossed about this and probably be careful with political twitter rants. You can never be too careful these days!

I'm sort of erring on the side of cynicism (again) though. Unless I have limbs dropping off, I'm likely to be rejected so will have to prepare myself to appeal. The good things are that I now have Citizens Advice and my doctor on my side and they all know that I've applied for ESA etc.

Ooh also, another thing! My lovely mother called Orange for me yesterday to see what we could do about my contract. At the moment, each time my phone bill comes I get nervous about having enough in the bank. With VAT it's around £28 per month and I barely use any of my allowance. I think I get about 300 or 500 mins, unlimited text, email and 500mb internet. I only use about 100 mins (if that!), about 300ish texts and about 20mb data. I read my emails on my phone but I don't send emails. The laptop is much easier to use for that.

For the past few months I've been using my overdraft to pay for phone bill and ask parents/partner for money in very exceptional circumstances (I hate owing people money) but my overdraft is fast running out so I absolutely need to have some sort of regular income. Well mum phoned and I ended up discussing options. As of next month I'll have been on this contract a year so can downgrade my tariff. The next one downs about £20 a month, not brill but a lot better and probably pretty fair for what I'd get. The woman on the phone was lovely too, very flexible with options. The £20ish tariff includes about 100 mins, 500 texts, some internet (which is perfect for me)

So yep! I think that's me up to date for now. Will keep you posted about what goes on next :)

Thursday, 28 March 2013

Citizens Advice Bureau/ESA Application

Hi everyone,

Again I've been a terrible blogger not keeping you up to date. I'm now living with my parents and partner has had to move in with some relatives. One salary is not enough to live on even for one person. If only the government realised that huh!

So, now I'm living with my parents, I'm able to apply for SOME kind of benefits. Big relief because my overdraft is nearly all gone but I still have pet insurance and my phone bill to pay for on a monthly basis. I've already had one bank charge from insufficient funds and don't want to spiral into years of debt.

I've really been worried about the kind of benefits I actually qualify though, especially after hearing about all these ATOS "horror stories". I feel as if I'm borderline between Job Seekers Allowance and Employment Support Allowance.

I've read so many things about benefits to see all the ins and outs and I felt that I wouldn't get a look in with JSA. The gov website states that, to qualify for JSA, you must be available for work immediately. Now I aim to be available for work soon (basically, as soon as I'm on the correct medication and these effectively improve my symptoms, I will be applying for suitable work) but I'm certainly not ready for work just yet.

The only other option (I'm aware of) is ESA. To qualify for that, you must have an illness or disability that significantly affects your ability to work. In theory I should qualify as my illness has got to that point. I've thought about the kind of things I'd need to do for any job and here's why I'd struggle/wouldn't be able to.


  • Standing (for a shop/restaurant/hotel job,  in a busy meeting even?) - After 5 mins I get extremely dizzy, my back, shoulders and legs hurt and I get extremely exhausted.
  • Walking (from a bus stop to work, up and down stairs in an office, from stockroom to shop floor or kitchen to restaurant area etc) - After a few mins I get dizziness, exhaustion, my legs hurt so much I must sit down.
  • Sitting (at a reception desk/ in a call centre) - I need a seat that will support my back properly and, even then, I ache and I get stiff joints if I'm sat in one position for a while. This would (and has) affect my productivity.
  • Carrying things (boxes, plates, folders etc) - I get shakiness on bad days and my arms can get quite weak. I drop things easily especially if the nerve pains in my hands are bad. Heavy things would wear me out very easily.
  • Bending and stretching (reaching shelves, replenishing stock etc) - Also causes achiness, exhaustion and shaking especially if stretching to put something back on a shelf.
  • Using machinery and facilities with screens (computer screens etc) - I could manage this but I get blurry vision so I couldn't read things very quickly or for long periods of time. On a good day this is ok, on a bad day, not so ok.
  • Travelling to and from work - On a good day I can just about manage a taxi or a train but I need to be driven to the train station. Buses are out of the question until my bladder symptoms improve and I can get over my anxiety. Any kind of travelling wears me out even if someone else is driving me. If I could drive myself maybe this wouldn't be a problem but my dizziness and blurry vision, anxiety with travelling anywhere alone, and lack of finances get in the way of that. 
  • Meetings - If I'm in a situation where it's not appropriate/not possible to go to the toilet whenever I need to, I get extremely anxious due to my overactive bladder. It gets to the point where I may have a panic attack or at least be unable to concentrate on whatever's happening. 
So, these are the factors I can think of that would be affected by my symptoms. Through working during my illness (before it got a lot worse in the past 4 months), I noticed these factors were getting to be a problem anyway and I'd have to really push myself to do these to a standard good enough to keep me in a job. Now my symptoms are worse, I'm even less able to do them and I can't see many (if any!) jobs that don't entail at least some of these factors. So ESA has to be my option.

I went to Citizens Advice Bureau earlier today to see if I could get some advice and basically to get their opinion on whether ESA was the right way to go. It was a bit of a wait but the waiting room is nice and calm and quiet. I got called into a small office (very warm in there! Had to take my coat off as the temperature was setting off my dizzy spells and headaches). The woman was lovely. She listened to me, took down my details and gave me some good advice. She also had a word with her supervisor to check and basically they think I have a good case for applying for ESA. 

The interesting thing was that the advisor told me that, at first, my claim would be turned down (you think they wouldn't be allowed to tell you that lol!). She also said that the CAB would help me appeal and help with my forms and everything so not to worry. There's no way I could qualify for JSA and I've got nothing to lose applying for ESA. 

It feels so good to have someone fighting my corner on this. Fluctuating illnesses are bloody frustrating. It's all well and good knowing I have to pace myself and build up on physical activities until I improve but how can I honestly hold down a job whilst doing that? From my experiences, if you can't fulfill all the duties, you can't carry on with the job. 

So yes, I will get my sick note from the doctor (hopefully my notes will be pushed through quickly so my newest doctor knows my medical history), gather together the requested information (luckily I found my p45 today, which is needed if I don't qualify for Statutory Sick Pay), fill in my form and send it off. 

Next step, sort my printer out!

Monday, 18 March 2013

MoodGYM review Part 2 (unfinished)


The next module is entitled “Thoughts”. The introduction to this very briefly recaps what should have been learnt from the previous module. Click next to proceed.

The “Depression Quiz” exercise is presented again. This must be to revisit how we are feeling since taking the course. My results are now in the Middle range, but, again these talk about physical as well as mental feelings. My medical condition presents physical symptoms that are similar to depression so I will take this score with a pinch of salt again.

The “Anxiety Quiz” exercise is presented again for an update on feelings. My results are still middle to high, however, most of the questions focus on sleep problems (a symptom of my medical condition) so I may not be as anxious as this test assumes.

The next page describes the goals of this module. This goes into the errors people make in their judgments, relationships and building up self esteem.

Next, is a page listing “David Burn’s Warped Thoughts”, a list of common errors of judgment made. Examples are given when clicking on the characters in the table. The errors I can definitely identify with include:
·         ALL or NONE thinking  – I find I use this type of thought in workplaces and if I happen to do something embarrassing whilst in a public place. For example, I may make a couple of mistakes in a workplace (such as forgetting to pass a message on or misunderstanding an instruction). I may not even be criticized much by my colleague but I will instantly think I’ve done a bad job for that day and I worry about making mistakes the next day. I may have had a day out where I’ve slipped on a wet floor or tripped over something. I will get really embarrassed if someone has noticed and will let it take over my whole day.
·          Disqualifying the Positive – I don’t believe I am very good at taking compliments; especially when they are about my physical appearance. I’m never quite sure how to respond. If I dismiss it, I feel I come across as moody though.
·         Jumping to Conclusions – I think I’m most likely to do this when it comes to exams or interviews. If I don’t feel I’ve done my absolute best, I will instantly think I have failed or have not even been considered for the job. What I’ve found though, is that I’ve actually done quite well in exams I thought I’d failed, and I’ve been put through to the next stage in interviews I thought I did badly at.
·         Magnification or Minimization – My attitude to my degree classification comes into play here and eligibility criteria for postgraduate courses only solidifies it. Even though I was ill for half of my degree, I still managed a 2:2. Now I should be glad I did this well but I can’t help but think I could’ve done so much better and I find that it will be very hard to get onto a postgrad course because 2:1 is usually the minimum criteria. I think I understood most of my degree’s topics very well but the grade is based on key terms and references remembered. My memory is terrible.
·         Emotional Reasoning (to some degree) – This applies when my moods are particularly low, or when I feel I have let myself down. For example, the other day I was supposed to take a 5/10 minute walk to my hairdressers appointment. No matter how ill and anxious I felt (I haven’t been anywhere by myself for a few months now) I was determined to go. Then, I let that little anxious voice into my head (metaphorically, I do not actually hear voices) which tells me that I will never have the courage to face this ‘fear’ as such. When I did get too anxious and cancelled the appointment I suppose, in my head, I labeled myself as a wimp for not pushing through and doing it anyway.  

In the next step, you are asked to apply the correct ‘warped thought’ label to examples of thoughts. Feedback is then given. The next exercise asks you to apply these labels to some thoughts you put down as part of an earlier module. You have to identify which of the warped thoughts labels your thoughts identify with most. This exercise continues and asks you to attribute the correct warped thought labels to statements you identified with in a previous module. You are also asked to provide a brief statement to say which warped thoughts you feel you identify with most.

On the next page is the recap and you then move on to ‘unwarping’ these warped thoughts. The list of warped thoughts is presented and the questions about them are shown when each are clicked. I can definitely see the idea here but I think more detail and examples may make changing perception more possible. The next exercise is to rethink warped thought examples you most identify with.

Next, you come to a page which describes problem areas. You are asked to have a look through and see which areas you can identify with. I think in some small way or another, I can identify with all of these and can think of examples of when I have presented these problem areas in the way I have reacted to certain events. For example, when I am there for a friend, I feel that it is unfair that they are not there for me when I need it. This is called the “sense of feeling deserving”. I believe I deserve that mutual support as friendship should go both ways. There’s a “should” statement for you! I wouldn't call this thought completely ‘warped’ but maybe I make it out to be a bigger deal than it is?

Next is a follow up quiz for the problem areas to see how high a percentage you have of each. My results are as follows:
  • The need for approval from others – 13%
  • The need to be loved – 17.4%
  • The need to succeed – 18.8%
  • The need to be perfect – 14.5%
  • The sense of being responsible for others reactions – 11.6%
  • Happiness is contingent upon external things – 11.6%
  • The sense of feeling deserving – 13%

In part 1 you can see my original results but I will do a brief comparison here for the sake of this review. I notice that my scores are now higher in “The need for approval from others”, “The need to be loved”, “The need to be perfect” and just slightly on “Happiness is contingent upon external things”. My scores are now lower on “The need to succeed” (significantly!), “The sense of being responsible for others reactions” (slightly) and “The sense of feeling deserving” (also significantly).  This may be coincidental or may be due to the influence this cognitive therapy programme has had on me. In general, I believe this programme has instilled more mindfulness in me. I may not have changed my behaviours drastically yet but I think more about situations that have made me anxious, upset me or things I have taken personally. I feel I am definitely learning to think more calmly although I’m sure that I still have a long way to go.

On the next page, you are presented with example results from each of the characters. Elle has high scores in the “Approval” and “Love” factors, Moody has high scores in the “Approval” and “Perfect” factors, Cyberman has high scores in the “Approval” and “Succeed” factors and Noproblemo has moderate scores in all factors (with slightly higher scores on “The need to succeed” and “The sense of being influential on others’ reactions”). I can’t say I really fit any of these profiles now.

The next exercise is entitled “My Scores on the Warpy Thoughts Test”. The task is to write a summary of your own strengths and psychological weaknesses based on the previous test results. I spoke about how I am career driven and determined but often find I compare myself to others and expect too much of myself in terms of what I achieve and how quickly I achieve it.

On the next page, you are introduced to the subject of Self Esteem and the aim to improve it. This is the final module in the programme. Click next to start this module. The exercise which follows is entitled “In Two Sentences or Less, What do I Think of Myself?”. The task is to list at least two of your positive and two of your negative characteristics. I wrote for positive that I believe I am kind, caring, ambitious and hardworking. I wrote for negative that I lack self confidence, I have low self esteem, I take things too personally and that I overthink things.

After submitting your answers, you will come to a page that explains self esteem in more detail. This makes sense and is something I can definitely relate to, but I’m hoping that the methods in which to improve self esteem are well explained in a way that will result in improvements in the long run, and the ability to protect yourself when circumstances result in a large knock of self esteem.

The next exercise is a week long and involves spending at least 10 minutes each day doing things you like to do (watching your favourite film, playing music etc) then 5 minutes each day being nice to yourself and seeing yourself in a more positive light. Keeping a diary of these things will help keep you on track. On the next page you could write down the days you did something nice, how many 'nice' things you did and more details about them. I filled in around 8 days with enjoyable things, such as complimenting myself on having nice hair that day, watching a favourite tv show, noticing that my vocals had improved (I enjoy singing, although I never perform lol!), cooking a nice meal. I didn't do many nice things each day, due to other responsibilities, but I definitely tried to take time out for 'me'.

The next pages acknowledged that I had finished the Thoughts module and gave a summary. The points made included:
  • Discovering people interpret events differently, and warpy thoughts included things like Overgeneralisation, Jumping to conclusions and Emotional Reasoning. 
  • Finding out ways of contesting warpy thoughts and learning to question the basis of my own thinking.
  • Finding out my own weaknesses, when it comes to the way I think about things
  • Looking at ways of improving self esteem.
There's also a recap of my scores on the Depression and Anxiety quizzes (middle for depression, middle to high on anxiety) as well as the type of warpy thoughts I have (All or none thinking, Overgeneralisation, Jumping to conclusions and Mislabelling), my areas of vulnerability (see the percentages I mentioned previously) and my characteristics (positive and negative). 

The next task is to write down a couple of goals you'd want to achieve by the next module. These are my goals:
  • I would like my immediate reaction, to situations, to be positive and healthier.
  • I would like to take events less personally.
I think these are realistic goals. I do tend to take things very personally and misinterpret situations. I think this is down to my lack of trust in some people. If they happen to talk in a different way (such as, in shorter sentences or in a less friendly way) I tend to worry that I have done or said something to offend them. In some cases I will ask, in some I won't. It can't be a healthy way to think right?! So yes, I would like to react to situations in a calmer, healthier, more positive way and think before I take something personally. Maybe even be more compassionate towards people?

The next module is entitled the "Unwarping Module: Changing Warped Thoughts". This module asks you to think back to previous tasks and modules, in order to see how you have progressed. Click "next" to continue. The Depression quiz is presented yet again. I guess this is to see if you have progressed; whether this programme is having a clinically significant effect upon your mental health. Some of the questions can be related to physical illnesses (such as lacking in energy, difficulty concentrating etc) so it is wise to keep that in mind when looking at the response.

I am now in the Middle to High range. I'm sure you have noticed that it has been a heck of a long time since I started this review so I have not been completely compliant with the programme. This has probably had an effect on the way the programme works for me. If you have read my most recent posts, you will have noticed that my mental health has taken a turn for the worse so the Middle to High range of depression probably makes a lot of sense. I feel programmes like this have brought my thoughts, events which have influenced them and past experiences to the surface; thus making my moods, emotions etc worse. I would not say that this programme is necessarily detrimental to my health though. Not at all! It has given me some things to work on. Sometimes bad things do have to come to the surface (temporarily negatively affecting mental health) before they can be treated or solved. I then proceeded to the next page.

The Anxiety quiz is presented again, probably for the same reasons as the Depression quiz. I responded "Yes" to all questions apart from "Have you felt keyed up or on edge?". Now I probably have felt this way on occasion, but it's always been in response to a situation that would naturally make most people feel that way (in my case, the atos assessments). Some of the questions ask about physical symptoms, which can be attributed to long term physical illnesses also. I don't think this quiz is very accurate to be honest. I believe it needs a field which asks how often you feel this way and whether it can be explained by a pre-existing medical condition. This would help to eliminate other factors which could affect the validity and reliability of the quiz.

As expected, my result is that I am in the High to Very High range. I may suffer some symptoms of anxiety but I do not believe I would be diagnosed with extremely high anxiety. The description of the result includes possible diagnoses to explore; such as Post Traumatic Stress Disorder, Panic Disorder and Social Phobia. I have wondered about PTSD because of how the abortion I had at 19 affected me. I do get flashbacks; triggered by stories I see on television and pains I get sometimes. These can stay with me for a while and take over my thoughts. I'm not sure though, and wouldn't want to self-diagnose. I'm sure there's a lot more to the illness than that.

The next page explains the Unwarping Module's aims. This includes:
  • Finding different ways of 'attacking' warped thoughts.
  • Exploring personal vulnerabilities further.
  • Improving self esteem further. 
The first aim is described in more detail. What the programme wants is for you to look at methods, for changing warped thoughts, without using straight talking or personal dialogue. Sounds a bit confusing huh? From the examples given, I think the point is to try to look at situations from an outsider's point of view (e.g. the aim which states "Taking the role of the reporter"). I think it's also about training yourself to think in a different way; in response to certain situations (e.g. "being your own coach") and testing yourself (e.g. "Setting up experiments to test thoughts and interpretations"). 

The next page concentrates on the first aim; namely "Take the role of the reporter (Turning Clark Kent into Superman)". This appears to be about distancing yourself from the situation. When we are directly involved in the situation, emotions tend to take over, so, logically, mentally distancing ourselves will help us to 'see' our emotions and analyse them; therefore, hopefully learning from and adjusting them. There is a recap to an earlier module; where an event was described involving the character Moody and a broken car. You can click the arrow to get the recap; where Moody's thoughts are described to show how he reacted to his broken down car. Underneath this recap, is what Moody's 'reporter' would say. He puts himself in third person, as if he was describing someone else's events and reactions. This makes the description objective rather than subjective, so warped thoughts can be identified and analysed more easily. 

When you click next, you are given some of the character Elle's thoughts about an event where her friend (or date?) was late. Elle's description over-exaggerates how late the friend was, what he said to her and how she believed he felt about her. Elle's 'reporter' gives a much more truthful and objective description. He wasn't as late as she first described, she acted a lot worse than she first described and he acted a lot nicer. Here you can see how recalling of events, in a very subjective way, can exaggerate certain things to make them seem worse than they actually were. 

You are then asked to practise this 'distancing' technique with a few examples. Afterwards, it is noted that it is easier to more logically analyse these example situations, as they do not relate to us. We have not experienced the situation so can interpret it in an objective way; with no residual emotions interfering. The next exercise is entitled "The Reporter's Notebook". In this exercise you are asked to look at some personal events and describe them in a table. The categories are "Behaviours/Comments", "Interpretations" (i.e., how you reacted to/felt about the event), "Facts" (what actually happened) and "Discrepancy" (the difference between what actually happened and how you interpreted it). I described a couple of events and then submitted my answers.

The next page introduces another technique; i.e. Increasing Positive Self-Interpretations. The concept of this is to look at the negative comments we make about ourselves (e.g. "I'm ugly", "No one likes me") and turn them into more realistic positives (e.g. "I like my eyes", "My close friends like me"). I think the point of this task is to touch upon increasing self confidence. In theory, the more you tell yourself positive things about yourself, the more you will believe them and will give out more confident vibes. Our attitudes about ourselves can show in body language that others can see. This can affect the way they view us, so if we feel more self confident, we look more positive to others. In the long run, if this works, it can positively affect our relationships. This leads onto the exercise where you are asked to give examples of negative comments, you tend to make about yourself, then give positive and more realistic statements.

The third aim is called "Setting up experiments to test thoughts and interpretations". With this method, you are asked to think about the negative/warped thoughts you've had about certain events (as demonstrated by MoodGym) and test whether they are seen as warped by others. This 'test' is done simply by asking others how they would interpret the event. If they interpret it differently, it may be that your thoughts about the event were actually warped.This is like an informal type of research so can have its inaccuracies. It may be, simply by coincidence, that the particular 'sample' of people you ask may have warped interpretations also. I guess, if you ask enough people, however, you may have a more accurate result. The larger the sample, the more valid and/or reliable the data. 

The exercise, which follows this, is entitled "Surveying the Scene" and asks you to spend a week observing events. You then need to pinpoint which one/s you respond to in an overly dramatic way. Take note of this then ask others how they would respond.

Ok so I need to test this exercise out so will be continuing this review next week! I'm so sorry it's taken so long. It is partly my fault for not sticking with it but I promise to get this finished soon! Maybe you could try out some of the exercises and let me know what you thought of them?