Friday 28 June 2013

Blah etc

I was going to write a few tweets instead but I figured a blog post would probably be better/make more sense.

I'm all over the place today, it's almost funny if I wasn't such a bitch today lol. Today has been a bit of a rush though, and it is very difficult to rush when you have a chronic illness!

I needed to get my sick note today to send off so I can continue getting ESA. So far my doctor's only been doing 4 week ones. I'm not sure how long you can get one for and surely "until I'm on the correct treatment!" doesn't qualify as a valid timescale for being sick haha. I've been all forgetful, confused, low and I guess a bit anxious so mum rang the surgery for me bless her. We thought it'd be good to try for an 8 week sick note so I don't have to keep sending notes quite as often. Luckily the doctor was fine with that.

I've been ridiculously tired. Literal zombie mode. I woke up (about half 11 oops!) to mum yelling to me to say I had half an hour to get up and get to the doctors to pick up the sick note. The surgery is closed for lunch between 12 and 1 and dad has to work after that time so I have to make it before then. No idea how I managed to make it in time as I'm extremely achy today. My legs feel really weak too.

Once I'd got all my papers together and in the dwp envelope I walked to the post box. I think that's around 20 metres (if that) from my door but my legs felt so weak, and I felt so dizzy that I had to borrow mum's stick. I've had to use it 2 or 3 times recently because of the weakness. I only use it if I absolutely have to because it really makes the nerve pains in my shoulders flare up. I've tried adjusting the height to make it more comfortable but it doesn't do much. It's my Atos assessment 8th July so I'm guessing I should declare that I have to use a stick very occasionally? It feels like my fibro is getting worse :S

Anyway, I get home from posting my sick note and now I feel very confused, worn out and dizzy. I can't concentrate on a lot. My shoulder kills as well! I guess it's better to deal with the nerve pains than to fall over on the way to the post box though.

Good job I didn't try to tweet that, I would've spammed everyone's feeds! I better go rest, I hope this made sense, the grammar's all over the place!

Tuesday 25 June 2013

Just a little rambling about my own strange mind

I'm not sure how much sense this will make, but I have this incredible urge to get my thoughts down so I'm not spending the day dwelling on them. Well, I'll spend less time dwelling on them at least!

I should probably put a trigger warning here as I will be talking about the deep thoughts I have and I don't want to upset anyone who may be having those kinds of thoughts and worse. These are just my words, and thoughts, and feelings that I need to get down because they seem to be churning inside me right now.

I've just been watching the first episode of "Don't Call Me Crazy" on BBC IPlayer. I've posted a little tweet about it but it surprised me that I found some parts of it a bit triggering.

I'm not even sure about my own mental health, and the only thing the doctors ever mentioned to me was a suspected anxiety disorder. I didn't even agree with them and this was when they were trying to diagnose the physical symptoms I was (well, still am!) experiencing. I've been sent away from appointments with many mental health questionnaires to fill in and post back but never had a follow up about them so I just assume that, in their eyes, I'm pretty mentally 'healthy'.

But how accurate can a mental health questionnaire be? Especially when you fill it in yourself. I know I've not been completely honest with my responses to questions. It's always the suicide questions that make me instantly put "No!" or "On no days" or whatever it is (my memory is getting worse I swear).

I know I thought I'd stopped having the thoughts but I still do. I still have the very low times and the suicidal thoughts. But they seem to be intermittent if that makes any sense? That's why I never ponder the diagnoses like depression, anxiety etc. With clinical depression, in particular, the symptoms tend to be described as continuous low mood or sadness, with it occurring for at least 2 weeks. I don't think I get that.

What I seem to have is the very very low moods, the suicidal thoughts, wanting to be by myself, not being able to tolerate the normal family conversations, not feeling comfortable in my own skin, hating myself, thinking I'm not good enough, feeling everything's my fault, not being able to cheer myself up (even with Peep Show! And I love that show, it's my favourite lol).

That'll happen for a few days. I'll be very tearful and then I think it's out of my system and I can be my cheerful self again. I'll not let myself look at upsetting things, will stay involved in happy things, do things I enjoy (like writing, playing music, singing). I'll want to keep busy, not in a manic way though! Just in a "I'm bored, let's do stuff!" kind of way. That'll carry on for a few days and then the horrible moods will happen again and I wonder if the 'happy times' were all just me finding a way to distract myself from my innermost thoughts. Is this normal?

So yeah, because I'm not even sure if my thoughts are 'healthy' I don't tend to be completely honest about them because I guess I don't want someone worrying about me. I'm not actually attempting suicide no matter how much I think about it. Read my blog post "Low" for more of an explanation. I also don't want to be given a whole load of anti depressants to take because of how they affected me last time. I don't want to have the mental health team putting me on their books if I'm not technically mentally ill, because those resources could be used for someone who does have an actual diagnosis/suspected diagnosis.

There's still a lot I want to talk about on this blog but it's really personal stuff from my past and I've not exactly kept this blog anonymous. I want to open up and say but I think I need to get to that stage where I don't mind who knows.

Anyway, I will go. For the record, today isn't exactly a 'bad' day mood-wise. I feel a bit numb but not in a really bad way :)

Monday 10 June 2013

MRI Appointment

I think I may end up using the rest of my 'spoons' to write this post, but I thought I'd better write it whilst the appointment details were fresh in my mind.

I had my MRI appointment yesterday (9th June). I was actually quite nervous but mainly because I was worried about being bursting for the loo during the scan. I get incredibly anxious about being in situations where I can't just go to the loo when needed. I tend to have an overactive bladder anyway but just thinking about it makes me need it more frequently. It's one of the reasons I've stopped taking buses. The wait makes me anxious, by the time I'm on the bus I need it quite badly and spend the whole journey terrified I won't make it to a toilet on time. Very embarrassing so I would rather spend a bit more money on a taxi or get a lift if I can. Nowadays I tend to only go somewhere if my dad can take me anyway, especially due to my symptoms getting worse.

Well anyway, I got to my appointment early so had time to calm down a little. The hospital I'm referred to is lovely! Really clean, nice atmosphere, organised and friendly staff. It's so refreshing to see as my most local hospital is very overcrowded so quality of care (as an outpatient at least) leaves a lot to be desired.

I went up to the desk to sign in and the receptionist gave me a gown to change into. It was one of those very thin ones that you tie at the back. I wasn't allowed to wear a bra underneath so was very paranoid about being a bit exposed lol! Ah well, just got on with it.

When it was my turn, the radiographer asked me the general questions: Do you have a pacemaker in you, a stent, anything metal in your body, are you made of metal? (That last one was a joke :P) then I was called in a couple of minutes later. I needed the loo again by that time so was a bit nervous again (I hate my bladder).

For anyone who hasn't been in/seen an MRI, I'll explain what it looks like etc. It basically looks like a massive polo with a sort of bed in it. I don't know if it's just me but the 'bed' is actually quite comfy! You put your head in the head guard and they secure it round you. The radiographer also puts headphones on as the machine makes quite loud noises. I don't know if this is the case with every hospital but I was given the option to listen to some music. I guess it helps to calm you down/distract you whilst the scan takes place. Oh you also get a panic button to press if you do get too nervous. I guess this couldn't be fun for anyone with claustrophobia but you just have to lie back and relax as much as possible (but don't fall asleep lol).

There was a little mirror attached to my head guard so I could see where the radiographers were. This was quite reassuring too because it can seem a bit isolating. You can hear the noises but it shouldn't be overbearing. They're sort of similar to old printers and photocopiers.

I calculated, the amount of time I was in the scanner, by the number of songs I got through. This worked out as just over 15 minutes. It pretty much flies by!

When the radiographer came through to take my guard away and lower the bed, I stood up and got the most incredible head rush! Also had jelly legs. I must have been very relaxed lol. Ok so I just have to wait for a letter telling me when my next hospital appointment is so the results of the MRI can be discussed. I am interested to see if they did find anything, though it'll probably be clear as anything. Don't get me wrong, I don't want it to show up something scary, like a brain tumour, but it would be nice to not have to spend so much time fighting my corner when all the tests show up clear (well apart from Vitamin D). It would be nice to have something show up so I can say "See! This is what I've got, you can't take that diagnosis away from me. It's right here on the results. Now treat it!" It'd be something to make my invisible illness a little more visible.

I should be using my spoons to concentrate on bettering my health (as much as I can) rather than on proving I'm ill.