"Not really disabled"

The other day, George Freeman (Theresa May's Policy Chief) gave some very insulting and trivialising comments about anxiety disorders. You'll find the details in this article . It seems he believes that those with anxiety disorders are "not really disabled". Apparently all we do is sit at home; taking pills.

After a lot of (very much deserved!) criticism, he responded with a feeble non-apology; where he expressed "regret" that people were offended. Now I do understand that he has had an anxiety disorder in the past & I would never invalidate his experience of that. I do think, however, he needs to educate himself on various anxiety disorders. He may then learn that the symptoms can vary in severity, are complex, and can be very debilitating.

Disability is officially defined in the Equality Act 2010 as this:

"A person (P) has a disability if-

(a) P has a physical or mental impairment, and
(b) the impairment has a substantial and long-term adverse effect on P's ability to carry out normal day-to-day activities."

I cannot speak for everyone with an anxiety disorder/s, but here are the ones that I have and how they affect me.

Agoraphobia

I get very anxious about leaving the house; especially if there are people outside. To travel anywhere, I rely on my dad driving me. I get far too anxious to take public transport, and can't even take a taxi on my own. I can't manage group situations where I have to stay in the room/it'd be considered rude to leave suddenly (such as a class or meeting) and have to be near the toilet or exit if I'm in a restaurant/cafe etc.

Last time I managed to take a train by myself (years ago), I had panic attacks and had to wait for a later train than the one I'd planned to take. I felt very nauseous, dizzy, shaky and sweaty for the entire journey. Once I arrived at my destination, I was physically and emotionally exhausted. I found it very hard to focus, and when I had to change trains, I ended up lost for an hour and almost in tears at the train station. It's a good job the friend I was meeting was a patient one! In order to get home, I had to get my dad to pick me up (the journey takes over an hour by car).

Obsessive Compulsive Disorder

I've had OCD since childhood, and have tried hard to hide my compulsions. On a bad day, it stops me from leaving the house. It makes me irritable, snappy, and has caused arguments in the past. I take much longer to do things than I should, and am often late for appointments because I've had to complete compulsions, or repeat them until I am "reassured" enough to leave the house. This condition makes me feel trapped and, when I did work, it caused me to miss meetings and compromised my performance at work.


Generalised Anxiety Disorder

I don't react well to changes in plans. I need to know what to expect, Usually, my anxiety flares up in response to things, but I do find that I can randomly panic and not know what has set it off. I get panicky about hypothetical situations, and cannot just wait to deal with a certain situation when it occurs. I tend to think 10 steps ahead of myself, and think of the worst case scenario. I will dwell on potential problems; even more so if I cannot think of a solution.

I find I get very paranoid as well, and I worry a lot about people's opinions of me. I worry about losing friends and look for cues that they may be annoyed at me or drifting away. I also am constantly asking for reassurance.

Phone Phobia

Recently, my phobia of this has lessened and I can now cope with making some phone calls. I still find that I get very nervous when receiving phone calls though, and most of the time I will leave it to go to voicemail. I worry about not knowing the answers to questions I may be asked on the phone. I also worry about not having details like reference numbers ready when needed. I often mishear things and get very anxious (panicky even) if I have to keep asking the other person to repeat themselves. When I worked, I had customers react angrily over the phone because of this. I would avoid answering the phone in the workplace, and have been told off by my manager. I think this contributed to decisions not to carry on my temporary contract too.

I cannot think of a job where you are not expected to use a phone, leave the house, go to meetings, cope with changes, be punctual, have good attendance or be timely with tasks. Even without my other mental health and physical health problems, I highly doubt I could manage work of any kind.

So yes, George Freeman, I may sit at home and take pills but there's so much more to anxiety than that, and yes I am "really disabled".

    

Spinning Plates

I was trying to think of a half-decent title for this blog post, and "Spinning Plates" was all that really came to mind. I needed a title that described how I felt when it came to dealing with physical health problems, as well as mental health problems. I've mentioned my diagnoses before, but I'll state them here and hopefully I can explain how managing these conditions feels a lot like "spinning plates".

Fibromyalgia: I've had this since 2010 and sometimes I feel I've accepted it, sometimes I get extremely frustrated, upset, and angry at how much it limits what I can do/how often I can do it. I'm so used to pushing myself that I find it very hard to stop and pace before I cause my symptoms to flare up. Sometimes I deliberately go too far, because I find physical pain a little easier to cope with than mental pain. When I do pace, the internalised ableism kicks in, and I feel as if I'm being lazy, not making the most of the day etc. I know that pacing myself is a good thing to do, and resting is still productive as it means I am looking after myself. I just wish I could feel less guilty about it!

Hypermobility Syndrome: I'm not entirely sure when it became Joint Hypermobility Syndrome, but I know I've been hypermobile all my life. As I learn more about it, I realise how mindful I have to be when it comes to using my joints. I have multiple subluxations every day, and sometimes I have dislocations too. Having doctors finally believe me (after a physio actually seeing and hearing a joint dislocate!) has helped a little, but doesn't take away the frustration with working around limitations and not getting much support for it.

Depression: Looking after yourself is so so important anyway, let alone when you are dealing with multiple illnesses & disabilities! I really do try, but Depression zaps my energy (what's left of it, thanks to Fibro and JHS anyway!). I struggle with motivation as well. Emotionally, the most basic sounding tasks can feel like trying to climb a mountain. On my bad depression days, I barely do a thing, and then I hate myself for being "lazy". If it isn't too bad on particular days, but my physical health problems are, I then get frustrated with myself for physically not being able to do things that might help my mood a little (e.g. making a nice snack, doing some cross stitch, meeting a friend).

Generalized Anxiety Disorder: When anxiety gets severe, it can limit you so much. I could be having a day with slightly less physical pain, or even less fatigue. On this day, I may want to make the most of this by maybe having a walk, or at least getting out of the house (even if just into the garden). Anxiety can have a real hold on me however, and often it becomes a panic attack (which then makes the physical pain, fatigue etc worse!). As much as I want to be able to do stuff, I just can't. It's as if invisible arms are squeezing me tightly, the room has become unbearably hot, my head is pounding, the room is spinning, and I can't focus on anything else. I know these things are down to anxiety and panic, and that they will lessen in time, but it does not stop me from feeling them so intensely.

Agoraphobia: The symptoms I get with Agoraphobia are very much the same as with GAD, but they are of course more about situations (such as being out of the house, being in a busy place, not being able to get out of somewhere quickly or easily). If it is quiet, having a short walk can help lessen my depressive symptoms temporarily. I want to be able to do this as much as my health allows, but the agoraphobia holds me back. Even if I manage to force myself outside, if it is bad enough, I will not feel better. I will spend the whole time on the edge of a panic attack and that will be my energy gone for the day.

Obsessive Compulsive Disorder: This can affect my ability to get out of the house and cope with daily things. The meds I'm on do help calm down my OCD related anxiety a little, but on a bad day I could struggle just as much as I did before I was on the meds. Again, this holds me back and stops me from being able to make the most of low pain/fatigue days.

I hope this makes sense. There's a lot of similarities with each condition, and of course I know that mental health and physical health often overlap. For me, it feels as if they clash too! I'm trying to manage my struggles with things like anxiety with going outside and guilt from not going outside, when it occurs on a day my physical symptoms aren't too bad. On the less anxious days, I want to do more to help myself, but physical symptoms limit how much I can help myself on bad physical health days!

I guess it's about moderation and, yes, Pacing. If anyone has any tips on getting that balance right, or even if you don't and you need to vent to someone who understands, leave a comment below!

Thank you for reading.

Let's try this again: Part two

(TW: Mentions of suicide, self-harm, and abortion)

On Wednesday, I had my phone assessment with the Primary Care Mental Health team. I was really nervous on the day, and was watching the clock. The more I waited, the more nervous I got, and the more shaky I was when the call finally came. In order to prepare for my assessment, I'd gathered together all my paperwork from previous assessments and appointments. I wanted to be as prepared as possible so that I wouldn't miss anything out during the assessment. I completely overwhelmed myself, however.

Although I was extremely anxious when answering the phone, I was very glad to have the opportunity to be assessed again and talk through the things I'd been struggling with. The therapist began the assessment by asking me what sort of problems had brought me to contact mental health services this time. I found it hard to know where to start. I had so much going on in my head that I don't think I made much sense at first. I tried to prioritise the main things that I needed help with; which included how easily overwhelmed I was getting, things from the past that needed addressing, how my anxiety seemed to be worse, and the recent breakdown I had. I told him that I'd been through CBT a few times in the past and found that it didn't help much. I said that it didn't seem to fit my problems, as I wasn't able to talk about certain things in the past that affected how I am now. The therapist said that there were different types of CBT, and some did consider the past when attempting to help with the problems that the person has right now. He told me not to completely shut myself off from the idea of CBT. I reluctantly said that I would keep an open mind, but that other therapies that have been suggested to me by my last therapist and my psychiatrist were EMDR and Psychodynamic therapy. This therapist said to me that there were other therapies we could consider if I found that CBT still wasn't working for me. One therapy he mentioned was a person-centred one. He gave a brief description of what that therapy entailed, and said that this would include going through things in the past and discussing how they affected how I see the world now. I said that this sounded like the type of therapy that may suit me a little more.

He wanted to know how long I'd had symptoms of Anxiety, Depression, and OCD. He also wanted to know the obsessions and compulsions I had now and in the past. Although I was diagnosed as an adult, I'd realised that I'd had symptoms pretty much since the start of primary school. He asked (sensitively of course) what I thought had led to this. Although I struggled a lot, and was in tears for most of it, I just about managed to tell him about the bullying, and the termination I had during my first year of university. He was very patient, understanding, and non-judgmental. He gave me time to talk about what I needed to, and was kind when my mind would go blank & it took me a while to remember what I wanted to say. After this, he gave me a brief analysis of what he thought were my main things that I needed help with.

Next came the necessary, but frustrating part of the assessment; the questionnaires. He admitted that he hated them too. I guess they have to quantify some things, to see how severely a client is affected by their mental health problems. It's just such a restrictive set of questionnaires/ I may meet the criteria for Anxiety and Depression, but if there are any other mental health problems, that could be identified by asking other questions, I don't have that access to those questions.

I may have described these questionnaires before, but the first one I had was the PHQ-9 . This is to test for Depression, and the severity of it. For each question, there is a score between 0 and 3. 0 means "not at all" and 3 means "nearly every day". When responding, you focus on how often you've been experiencing (the things stated in the question) in the last two weeks.

For this questionnaire, you have a score out of 27. My score was 24; which places me in the severe category. The therapist also had to assess my risk of attempting suicide. I told him that although I frequently had thoughts, and sometimes strong urges, I'm unlikely to actively plan or carry them out because of my cat and my parents. I forgot to mention about my regular self-harming, but I guess this is something I can talk about during therapy sessions.

The second questionnaire was the GAD-7 . This tests for Generalised Anxiety Disorder and the severity of it. Similarly to the PHQ-9, there is a score between 0 and 3 for each question. Again, 0 means "not at all" and 3 means "nearly every day", and you are asked to consider how you've felt in the last two weeks.

For this questionnaire, you have a score out of 21. My score was 18; which places me in the severe category.

The third questionnaire focused on phobias. For each types of phobias described, you give a score between 0 and 8 to state to what extent you would avoid various situations because of it. A lot of my fears involve loss of control; for example, losing control of my bladder in a public place, having a panic attack etc. 0 means you wouldn't avoid the situation, 8 means you would always avoid that situation based on the phobias mentioned.

Once these had been completed, the therapist discussed with me what the next steps would be. He said that he believed I should give CBT another go, at least to tackle my symptoms of OCD. He did say that I could have person-centred therapy instead, if I still find the CBT unhelpful. I reluctantly agreed to this. At least I can have access to other therapies, instead of it being CBT or nothing. He said the wait is likely to be around 10 weeks, as the waiting list is long. I knew to expect this anyway. Before we ended the call, he made sure that I knew who to contact if I do become actively suicidal. These were the Out of Hours team, and Samaritans.

 I do feel a little more hopeful about this mental health team, but we'll have to see how therapy goes. 

Let's try this again.

After months and months of avoiding mental health services, and one GP appointment that I got too ill to follow up, I'm finally asking for help again.

It's been a mixture of reasons really. Fibromyalgia flare ups, helping my parents through various things, feeling I don't deserve help, and being too anxious to use the phone (you have to ring up and self refer to the Primary Care team).

It took a breakdown in front of my mum to push me to ask for help. It was mum who got in touch with the GP and then the mental health team to get me to stop avoiding this. I've been getting close to crisis point recently so of course it's important I get some sort of support. I've bottled up so much (and 'coping' by self harming) because I didn't want to worry my parents and I didn't want to bring any attention to myself. I knew it wasn't a healthy thing to do, but I felt that I had to do it.

After a very nervous wait, I had a callback from the Primary Care mental health team earlier today. I was shaking the whole time, but managed to give them the details they needed (contact details, diagnoses, previous therapies, demographic questions etc). They asked if I was suicidal/had plans too, and gave me some helpline numbers. I don't know if I'll manage to ring if I'm in crisis (it's scary enough even on good days!) but at least I know who to contact.

So, the next step is a phone assessment this Wednesday. It's been a while since I've had a mental health assessment, so I'm glad it'll happen even if I'm really nervous about it being over the phone. The person on the phone today was really friendly and patient with me though, and I hope the person I speak with next is the same.

My next post should be much sooner than usual, and a lot longer than this one! I'll be talking about the assessment and what the next step will be.

Yay!

This is a very short post, to point you towards a blog post I recently wrote for a website. "The Secret Illness" shares people's experiences of Obsessive Compulsive Disorder. These submissions really show the various forms OCD can take, and how complicated it can be. This is the first time I've been asked to write something for a website, so I'm very excited about it!

Here you go: http://thesecretillness.com/2015/11/02/amy-25-west-midlands-uk/