Wednesday 31 July 2013

My Healthy Minds Triage Appointment/Opening up

Slowly, I feel like this metaphorical weight is being lifted from my shoulders.

I had my telephone triage appointment today with Healthy Minds, this was to address my mental health. I was so nervous about it. I found it really difficult opening up to my gp, so I thought it'd be even worse with this person I didn't know. It actually wasn't.

When my appointment letter came through, it was accompanied by a questionnaire to address things such as Daily Living, Anxiety, Phobias and Low Mood. By each question, I had to score either how severely, or how often this issue affects me/is affected by my mental health. Obviously some of the points (like work, sleep problems, being able to socialise, lack of energy) I had to annotate as they are partly (or severely) affected by my physical illness too. I had to get this ready for today; when I was due to have my triage appointment.

The phonecall came dead on time and I spoke to a really friendly sounding Psychological Therapist. She explained things such as confidentiality, health and safety etc then we went onto the scores. I explained about my Fibromyalgia and Overactive Bladder and she was very understanding; knowing to take this into consideration with some of my responses.

I took a deep breath when discussing my score for the last question: "Thoughts that you would be better off dead or of hurting yourself in some way". I'd scored that a 3, i.e. "Nearly every day". Obviously we had to talk about that in greater detail but she was very understanding and we had a really good chat about that. I'd not attempted suicide or actively planned to. I'd been close on really bad days though.

It's great that I can talk to some friends and family about this but I know I worry them too. If a friend or family member of mine was talking about this with me, I'd be as supportive as possible but it is so hard to be impartial as it would affect me and I'd be very upset that I couldn't help much. The therapist doesn't know me so we were able to talk about this in a matter of fact way and really get to grips with what makes me feel that extremely. She asked me what my strongest feeling was, and I said "Guilt". It's the guilt from my physical health declining so much and making me feel as if I am a burden to my family and friends. Those around me have to make a lot more effort to see me. Some understand, some never will and I have to accept that I can't always change that. Also, I can't help around the house as much as I'd like to. We could probably really benefit from having extra help round the house, but I doubt our needs would be seen as urgent or serious enough so we just have to carry on as best as possible.

We then went on to things I do in order to cheer me up. I talked about this blog, talking to loved ones and music. I guess sometimes this blog is like a journal to me. It's out there for everyone to see but the point is that I want to be more open about my physical and mental illnesses. There's no shame in it and if anyone has a problem with me being this open, frankly they can go swivel lol! It helps. I have got to know people more, through this. I have become closer to people as well so I would never regret writing this blog. The music is a great way to get creative. Sometimes (very rarely!) I can write lyrics. They usually end up as half finished songs but I always feel better after getting them down. I play flute, keyboard and guitar as well. I haven't got them out in a while but I'm working on it. I'd like to write a full song incorporating at least some of these instruments. Lastly, I enjoy singing. Apparently I sound good, although I'm very critical of my own voice. I didn't mention the baking but I enjoy that too! A lot of the time I will need help but to create something tasty is a real mood booster sometimes. I call it Baking Therapy.

*After this, she asked if there was anything else that I feel was having an impact on my mental health. Now this one was difficult. I've really been umming and ahhing about even mentioning it in this blog. I'm not sure who reads it and I certainly don't want to end up a topic of gossip but the whole point of this blog was to open up. Maybe I should just say? Ok, well I guess this has had an impact on my mental health to a certain degree because it's something I never really got closure from, it happened very quickly and I just had to 'get on with it'. When I was 19, and nearing the end of my first year at university, I found out I was pregnant. I'd not long broken up with the father and definitely didn't feel old enough to have children. Let me just say that I didn't feel that way about other people I knew who had children young! This is a personal thing. So I was close to my exams, felt really panicked and rushed so made the hasty decision to have a medical abortion. God this is so hard to talk about!! I can probably count on one hand the amount of people who actually knew about this. It was a really traumatic experience and I felt like I had to keep it private and just get on with my degree. I didn't talk to anyone in great detail about it. I had an amazing, AMAZING friend who took me to the appointments, was always there when I needed her and kept my secret. She really is a friend for life, I owe her so much. The nurses were honestly horrible. No support, just acting like I was a stupid teenager who got herself pregnant. It was protected for god's sake. Anyway, I wasn't offered any counselling, even though it was pretty obvious that I needed it. The whole time I was in tears, shaking. Anyway, so I went, had this done, didn't even tell my personal tutor about it and got on with my exams. It was pretty clear that this had an impact on my grades as I suffered a good couple of weeks of agonising pain. I had to just take my codeine, turn up and grit my teeth. I got through it though! And managed to pass my degree even though it was very difficult with all this going round my head. To this day I feel like I never got closure from this experience. I always wondered whether I made the decision too quickly, was I selfish for doing this? I also hope that this wasn't my only chance to have children. These are the things I need to address and get closure from.

Back to the phonecall. It was an amazing chat, she was so patient and understanding. We even spoke about my degree and how I'd like a similar job to her in the future! Although I was crying after, I did feel a bit better for getting this out. We then discussed the therapy options for me.

There's actually a therapy program for people like me, who have an ongoing physical illness that is now having an impact on my mental health. It's called the Expert Patient Programme. It'll be group sessions but I guess they'll be understanding of my physical needs (like being able to go to the toilet whenever I need to). Plus I want to push myself to be more comfortable in group situations. If I can do this, then I consider it a big personal achievement. Also, I'm being referred for one to one Cognitive Behavioural Therapy sessions. Although I've been open about it on my blog (and very nervous about what response I'll get now!) it's still something I need to discuss privately, alongside other feelings etc.

So that's the next step! I thought it'd be a lot more difficult to access the help but I actually feel supported in all this. I'm not miraculously cured and this is only the beginning of the journey, but it's a big step to take. And it wasn't as scary as I thought :)

Right, I need to eat now so must go! Thanks again to all my readers :)

*I'm really tempted to delete this part. I just don't know. It was such a private thing in my past but I suppose I have to be open about it so I will try and leave it here. Feeling so anxious right now!

Monday 22 July 2013

The Second Step

As you well know, I've recently begun opening up about my own mental health. I couldn't deny it anymore. I know all this has been triggered by my fibromyalgia getting worse and being chronically ill for so long. It has had an impact on every single part of my life. I've lost friends because of it, had to give up working, given up cheerleading during uni, can't continue my uni studies yet and socialising is very very rare. Everything I enjoy has become so difficult to keep a hold of. How could it not affect me emotionally/mentally? I hesitate to make plans with friends because I never know when I'm going to have a really ill day. I hate letting people down last minute. 

Anyway, the fact is, I can't ignore the mental and emotional symptoms. They are affecting me just as much as the physical symptoms, so need to be addressed sooner rather than later. 

So, I went to my GP (see my previous post for more info). It took every bit of courage I had left. I call this blog "The Second Step" because the first step, to addressing my mental health, was to approach my GP.

I was given a card with contact details for a self referral counselling service called "Healthy Minds". The card is called the "Ticket to: RECOVERY". Very positive hehe. Well I've had this card for at least a week now I think? Probably longer. What you're supposed to do is ring the number on the card and they assess your needs. Talking about my feelings face to face with my doctor (who I see fairly regularly) was difficult enough, but talking on the phone (which I hate doing anyway, get incredibly anxious) opening up to a complete stranger would be ten times worse. 

I finally rang the number today. I've not long been off the phone actually. It's just, I woke up feeling so down, so hopeless, completely rock bottom. I felt that if I didn't ring the number to access some help, I would completely break down and do something stupid. I've sure thought about it enough. 

I wrote down some notes in no order at all. This was to help prompt me. Then I rang the number. I was shaking and close to tears at this point. Had no idea what to expect. The first person to answer was like a general receptionist I think. She told me the phonecall would take about 10 mins and was I happy to continue? Then she took my contact details, address etc and put me through to a woman who was to book an appointment for me. I had my calendar ready. The appointment booking woman asked me a few equality questions (ethnicity, religion, sexuality, disability level). I took the opportunity to mention the fibromyalgia. She asked for my home number as well. The brain fog decided to surface then (thanks fibro!) so it took me a minute to remember it! She was very patient though and took my details no problem. 

She then told me that what would happen next was that I would have a phone triage appointment booked for me. It would take 30 minutes. So we booked it for 11.30am on 31st July (the day after my atos appointment, so I'm going to need it!*) 

So once that was sorted, that was pretty much it for the phonecall. I thought I'd have to talk about all my feelings over the phone right there and then, but no! That was it! I suppose it would help keep the phonebill down too. I rang on my mobile (the landline volume is ridiculously low and my hearing's not so good).

I thought I would write a blog post about this Healthy Minds service for anyone who has been referred to it and isn't sure what to expect :) I will write about the next step at the end of this month. I want this blog to describe my journey through mental illness as well as my mystery physical illness (well, it's still not 100% diagnosed).

Thanks for reading :)

*Ah yes. I don't think I mentioned the Atos appointment! Well they cancelled on me a while ago, re-booked for this month and, when I turned up for the assessment (in good time too!), I found out they'd cancelled that one too! Only they hadn't bothered telling me beforehand. The receptionist gave me a very halfhearted "sorry" and told me I'd get a letter for my rescheduled appointment. That cancellation/rescheduling letter came the day after my assessment. Very organised...

So yes, I experienced a massive flare up of my symptoms that day. I was bedbound for most of the day; not able to do much more than type quick messages back to friends and sleep. I think I've recovered (ish) from that now. Still in pain, still exhausted, still confused/forgetful, still feeling very very down and anxious, but able to get out of bed. 

Thanks to everyone who has been so supportive of me. It means so much, I owe you everything.

Friday 5 July 2013

The day I opened up about my Mental Health

Well I did it!

I finally spoke (honestly) about my declining mental health to my gp. I didn't think it'd be so difficult though. Ok, let's start at the beginning.

A few weeks ago I had my MRI and the radiographer (or assistant, I'm not sure) told me I would receive a letter within the next couple of weeks for an appointment with the doctor (the General Medical Practitioner) who sent me for the MRI (to discuss results etc). Fast forward a few weeks and I still hadn't received the letter. As my brain fog was so bad my mum rang the doctor's secretary for me to see what had happened about this appointment.

The reply annoyed me. First off, the MRI was clear (phew! In one way but annoying as invisible illness is still invisible) but, because of that, the doctor had decided to discharge me back to my GP with no follow ups or anything. Hmm, well the symptoms are still there, ruining my life, keeping me on ESA, making me feel TERRIFIED about my Atos appointment due to lack of evidence to show to prove that I am ill and it's not going away anytime soon.

You see, he'd originally said that he'd get the MRI booked and (at the same time) would refer me to a Rheumatologist. He lied.

Ok so, mum booked an appointment with my GP as I'd have to get a referral through her. I'm guessing it will take ages to get a rheumy appointment now as the referral isn't being done directly through the hospital. I just want to get well enough to work! I don't want to be unemployed for years and years because that will make it so difficult to even get a job.

Anyway, fast forward to the GP appointment (Wednesday). I'd compiled a list of what I wanted to talk about. Firstly, the referral. Secondly, the Pregabalin dosage (not doing a damn thing to alleviate nerve pain). Thirdly (one I was hesitant about), my extremely low moods/suicidal thoughts.

I felt quite nervous on the day of my appointment. Probably more for the third thing than anything else. She has been really good with listening and considering things I want to be done. Obviously I listen to her advice too! It's just nice to know that your GP is a path to further care, not a barrier.

I swear I spoke far too quickly during my appointment. I didn't think I made a lot of sense either. I'd written down what I wanted to say but the brain fog was back and I couldn't get my words out as fluently as I would've liked. Somehow she made sense of what I said though.

She said she'd get the referral done straight away. I was very relieved about that. The specialist for Fibromyalgia is supposed to be a Rheumatologist as far as I've been told so hopefully I'll be getting someone with a lot of knowledge about it (hopefully).

She also upped my Pregabalin dose. I was originally on 50mg a night (2x25mg tablets). I'm now starting on 75mg a night, going up to 75mg in the morning and 75mg at night (150mg in total so dose is tripled!). This sounds more like the dose I should be on, so hopefully I'll notice some kind of difference.

I did mention my Atos assessment coming up as well. I really am nervous about it and have left it too late to ring up and ask about having the assessment recorded. Stupid me. I think I'll just have to bite the bullet and try to deal with whatever is thrown at me now. I know I'm not well enough to work. God knows I've tried to think about what kind of things I could cope with in the workplace in my current condition, to no avail. I am not a scrounger. I need that ESA and I do intend to apply for work once I feel I could cope, and that it won't make me worse. I know there's not much my GP could say, just to mention that I am still under investigation although Fibromyalgia is the diagnosis I have been given. I'm guessing I should show my hospital letters too to show that I'm being taken seriously...

Ok, so by that time the GP was asking if there was anything else I wanted to talk about. I nearly said 'no' but I took a deep breath and started to tell her about how I'd been feeling emotionally/mentally.

I said I'd been having some very very low moods but I wasn't sure if it was worth mentioning because some days I actually don't feel so bad. I try and keep myself busy; doing things I enjoy. It's just that, the thing is, once I've stopped doing the things I enjoy, my moods go very low again. I beat myself up mentally, feeling guilty and worthless and frustrated that I can't do the things I used to (socialising lots, working, earning money, travelling). I wondered whether the 'good'/ok/not so bad moods I had were because I was distracting myself. Not letting myself think even. It's just all getting very hard to cope with.

At this point I had managed to burst into tears. I was very apologetic about it too. I hate crying when I'm trying to explain important things. I always think of myself as an emotional person but I hate, hate, HATE showing that kind of emotion. I think of it as a weakness. I don't see it as a weakness if anyone else does it but only when I do it. I felt that I had opened this floodgate (literally!) once I had broken through and spoken about my mental health. I'd completely let the barrier down and was ready to face the consequences. It was a bit of a relief but also left me feeling vulnerable.

I explained that I hadn't been very honest about my mental health with previous GPs as I was worried that all my physical symptoms would be attributed to a mental health condition, the physical symptoms would stop being treated and I would be given a load of anti depressants/anti anxiety meds again. That would be a huge step back for me. I don't have a problem with people taking these meds if they truly do help. What would give me the right to have a problem with that anyway? It's just that I want to TALK. That is the best treatment for my mental health.

The GP was actually amazing. Before I even had to explain, she said she knew that it was the physical illness causing the mental illness and NOT the other way round. She understood that chronic physical pain often went hand in hand with conditions such as depression and anxiety. She actually ASKED me if I wanted to try some anti depressants or if I wanted to consider counselling. Through my tears, I nodded for counselling. She gave me a self referral number to put myself on the waiting list to see someone. I was very grateful and the appointment ended there.

It felt like a very successful and productive appointment. We must've gone over the 10 minute limit but she listened to me, she was understanding, helpful and patient. I don't think I've ever had that with a doctor before and I appreciated it so much. It feels like half the battle has been won, just to have a co-operative doctor.

So, the next step is to actually call this number. Something I'm hesitant to do (I know, I should call soon) for a few reasons:

  • I'm still not very good with calling. Partly due to the brain fog, partly due to me getting nervous talking to someone I can't see. If I can email/write instead, I will take that option. At least with those forms of communication, I can explain myself properly and think about what I want to say. 

  • I have this real sense of not 'deserving' to call up for counselling. I'm still confused about the ok/almost good moods. I don't think they're that rare, they happen at least twice a week (I think) so are my bad moods consistent enough to warrant intervention? The reason I spoke to the GP was due to the fact they are there, they happen a lot and they are very bad. I do still get the days where I think about wanting to not live anymore. It's terrible I know. There are people in much worse positions but, it doesn't matter how much I think about that, it doesn't take away the fact that sometimes I don't see a point to living anymore. 

  • I worry that the counsellor will wonder what I'm even doing trying to get help with my mental health. Are these low moods just me moaning/complaining about things? Is it 'normal' to have these thoughts? I know I'm not coping with them very well. It almost angers me that I can't just throw away my feelings of guilt and selfishness and just get on with 'it'. I want to stop thinking in this way as I don't think it's healthy. 
I think my next post will probably be about the phonecall to the counselling service and/or the Atos assessment. I think I need to throw in something positive too, the posts have been a bit depressing recently.