Wednesday 18 June 2014

I have nothing to hide, but that's not the point.

I've been thinking about the links between my physical and mental health, and the attitudes of this government and the media.

Years ago, when I was healthy enough to work, I used to assume that those who needed to claim disability and sickness benefits (namely DLA and ESA) would be able to do this without much hassle. I also believed that they would be properly supported, without judgment or harassment.

Now I know, this isn't true.

Ever since I've been claiming ESA, I've noticed the increase in tabloid headlines; claiming that most people "on the sick" were doing so fraudulently. Contact details for reporting fraud have been more visible, and so malicious calls have been made. More programmes on television about people on benefits. Society seems to be more suspicious of anyone on benefits (be it ESA, DLA/PIP or JSA). I'm not sure if I'm being paranoid, but I feel as if all eyes are on me when I leave the house. I still have people doubting how ill I am, how much pain I'm in, whether I *really* need my walking stick. It's horrible, but my experiences of being judged/harassed are fairly mild compared to some.

Just over a month ago, I went on holiday to Spain with my parents. Before anyone says anything about "luxuries", a relative had helped us pay for the holiday and we had all saved up bit by bit for over a year. We didn't go on fancy excursions and we stayed in a small hotel. But I was relatively quiet about this, on social media. I worried about people judging me for daring to spend their so called "hard working taxpayer's money".

I shouldn't have to justify what I spend my money on. It is no one's business. As long as I'm only claiming what I qualify for, and I'm making sure essentials are paid for first, why should it matter? I'm lucky that I live with my parents, and that (with a long time saving up small amounts) we can afford a nice thing on rare occasions. If I couldn't live with my parents, I dread to think if I'd even have a roof over my head, let alone any other essentials. That odd nice thing gives me something to look forward to. Having a lifelong, incurable physical illness, has taken a real toll on my mental health. I spend my days resting, trying to make sure I have one hot meal a day (on bad days it does have to be take-out when my parents aren't able to help), blogging when I'm able (with the help of a speech-to-text program) and going to appointments with dad's help. I've not seen one improvement in my physical or mental health. In some cases, things have become worse. Every day is pretty much the same. I am trying to study for a CBT diploma, from home, but I haven't completed nearly enough; due to a whole host of symptoms (including brainfog).

Last night, I found out that the government are currently picking claimants of ESA, JSA, Income Support, Pension Credit or Housing Benefit, at random and are visiting them (without notice in most cases) to check they are receiving the correct amount of benefit. They will ask for ID and to look at bank statements. They cannot force themselves into your home, but your benefits could be affected if you disagree to this visit. See these links for more information:

This knowledge sent my anxiety through the roof. I thought I was about to have a panic attack, and have been feeling very ill since. I have nothing to hide. I have declared everything to DWP (including the holiday, might I add), yet people like me are still treated with suspicion. I worry about the effect this, out-of-the-blue visit, will have on those with serious mental illnesses. How about those whose illnesses (physical and/or mental) could be seriously compromised by the stress of these visits?

I'm sure you have heard of the effects of the infamous Work Capability Assessments, people being (wrongly) found fit for work, unfair sanctions and the huge delays for being assessed. These things have led to deaths by either suicide or pressure causing peoples' illnesses to progress severely. What civilised society would allow this to carry on, all in the name of making sure that the miniscule percentage claiming fraudulently are found out? Is it worth it?


I recently subscribed to Benefits and Work and received their latest newsletter on 30th July. They made a Freedom of Information request, regarding these DWP visits, and have received the following information:

"As a result of that request we can now reveal that, in reality, the vast majority of people who get a visit do not get a letter in advance – surprise visits are the rule, not the exception. There’s more on this below.
However, we can also reassure our readers that:

  • you don’t have to let them in; and
  • you can insist on being given proper notice;
  • you can insist on having the interview at a DWP office instead of in your home.

And doing so won’t affect your benefits, though refusing to take part in an interview at all may leave you open to a fraud investigation."

"There are also certain classes of claimant who should never receive an unannounced visit, including:

  • “customers suffering from depression or a medically defined mental illness
  • customers with an alcohol or drug-related dependency
  • disabled customers where there is evidence from the preview information that they may be distressed if an MRO calls unannounced."

However, where the visiting officer suspects, on the basis of your files, that you may be committing fraud they can still carry out an un-notified visit even if you are in one of the categories above.
And it’s important to be aware that one of the things visiting officers will do is look out for any difference between the details given in your work capability assessment medical report and your behaviour at home. The rather bizarre example given is that of a claimant who is up a ladder washing windows when visited, but their incapacity is listed as vertigo.
So, if your condition is a variable one and you’re having a better day, make that very clear - even if you aren’t asked."

This may not be brilliant news, but at least we now know what our rights are, and that there are exemptions (whether the DWP practise what they preach, however, is another story).


  2. A newsletter, from Benefits and Work, sent to me on 30/07/2014, Entitled "An Unexpected Knock At The Door Is The DWP Rule, Not The Exception"
  3. Click here for the online version of the letter.

Monday 16 June 2014

The long journey of meds

This is just another little updates post. I want to try and write more regularly, so I don't end up with an extremely long-winded post.

The whole appointment booking system has been changed at my GP surgery now. It used to be that you could call any time they're open, and book appointments in advance, as well as same day appointments. You could also sign up for the online booking facility. You would always get a face to face appointment, unless you asked for a phone consultation. Now, they've decided to only do same day appointments (apart from very exceptional circumstances, but don't ask me what specifically) and they've taken down the online booking facility. You ring reception and give them details of why you need the appointment. Instead of booking one for you, they get the GP to call you back, so you can explain to them what is wrong. The GP themself then decides if you need a face to face appointment, and will book one for that day if you do need one. It's supposed to help with communication. I find this a much more complex and ineffective system. It is especially difficult for people who have problems with communication over the phone. I could barely get my words out when speaking to the GP on the phone, as my brain fog and anxiety were very bad that day. Luckily I could get an appointment, and she did understand, but it didn't stop me being extremely nervous and embarrassed. Online booking would be a lot more helpful for me!

I really don't visit my GP enough. Maybe it's lack of faith in treatments, or me trying to deal with things by myself. I went the other week for a few reasons, but mainly for pain and Depression. I'd lost a little faith in her, because of the dismissal of my hypermobility symptoms (and a few symptoms that come up in the Ehlers Danlos Syndrome diagnostic criteria). I was reminded of how supportive and helpful she is, when it comes to working with me to get referrals, new medication, generally talking through symptoms and side effects etc.

So far, these are the tablets I've been put on for Fibromyalgia (well, some when they thought I had M.E). Oh and not altogether of course!:

Citalopram 40mg, Amitriptyline 30mg, Lyrica (Pregabalin), Neurontin (Gabapentin), Codeine Phosphate, Ibuprofen, Zopiclone (for sleep),  Duloxetine.

I've also been prescribed tablets for Vitamin B12 deficiency, Folate deficiency and Vitamin D deficiency. As you know, I'm on the Vitamin D meds for life. As far as I'm aware, my B12 and Folates are back to normal. I only had to be on meds for them, for about 3 months. The Citalopram, Codeine and Duloxetine did not suit me AT ALL. I was very very ill on these, so had to stop them. The Amitriptyline (at that dose) didn't do a thing, apart from help with sleep, so my old GP took me off those. The Zopiclone didn't do a thing either. The Lyrica and Neurontin did nothing, apart from make me put on weight. NOT something I wanted as my self confidence is extremely low.

My GP and I discussed the meds I'd been prescribed and whether they'd been effective. She's now said I can go off the Gabapentin completely (I've already weaned myself down from 900mg to 300mg very slowly, with little or no withdrawal symptoms). Has anyone found that they've lost some of/the weight they put on with this med, after going off it? She's also prescribed me a stronger NSAID, Naproxen 500mg for pain. I'm hoping this at least takes the edge off. I'm not expecting to be 100% pain free. I'd just like the pain to be manageable enough that, when I can work again, I won't be in agony halfway through my shift. When I lived with my ex and was working (keep in mind that this was a sit down, not-too-stressful job) I had to grit my teeth throughout my shift, keep myself awake, hope people didn't notice how often I went to the loo, use all my energy just to concentrate, and I was completely done in by the time I got home. This was when I was less ill as well. To do even that job, would be impossible right now.

I'd been indecisive about this for a while as well, but I mentioned wanting to try anti-depressants again. I'm attending psychotherapy every week and I'm hoping that does help, but I need something to help with these massive dips in mood and these huge suicidal urges. I said the things that had been holding me back, were possible side effects and the possibility of even more weight gain. She had a look through her medication book (I forget what it's called now!) and I suggested possibly going on a higher dose of Amitriptyline. It would at least help the sleep anyway. I also asked whether this would cause weight gain. Luckily, my GP said it wouldn't.

So that's it for now! I'm getting very groggy with these new meds, and I'm even more fatigued at the moment. I think this is to be expected though. I'll be seeing my pain specialist again in a couple of months. She has referred me to physio and for acupuncture, but I wonder whether she will want to put me on any other treatment for nerve pain. I don't think she quite understands how debilitating Fibromyalgia can be.


I almost forgot to say! A little off topic for this post, but I saw my Bladder Specialist for the last time today. I've cut down my caffeine and other irritants as much as possible, and I'm doing the bladder training exercises, but I've not found any difference in urgency, retention or frequency. As I've done everything she suggested, there's nothing more the specialist can do, so she has discharged me. I've now got to wait for my Urology appointment; where it's likely that I'll have to have a Urodynamic test and I'll be put on more medication. I'm at the point now, where I'll just try ANYTHING if it'll work. I'm fed up of my bladder issues taking over my day to day life.

Wednesday 11 June 2014

And breathe...

I have about three blog posts worth of things I want to talk about, and I'm not going to be writing them in any particular order. I was tempted to write them all this week, but I think that may be a *teensy* bit ambitious :)

I think I may have talked about my first session of High Intensity CBT and since then, I've had another two sessions. If I remember correctly, the therapist said that I will have 10 sessions altogether? This is a little better than the 6 guided CBT (level 2) sessions, and I'm hoping that I can make some progress now.

Although there's bound to be some digression, I do like how these sessions appear to have a bit more structure to them. I now have a Therapy Contract and Care Plan; something I didn't have before. In it, my long term goals are:

1) To go out e.g. to town and visit friends.
2) To seek support from others when I experience thoughts of self-harm/suicide.

I would like to make "getting back into employment" a long term goal, but that's dependent upon my physical health as well. Although I'm sure the DWP would disagree, it's also a bit too ambitious right now. Generally, I'd like to be better at seeking support instead of shutting myself away, and I'd also like to be able to get out of the house (for something other than an appointment) more often. To me, those seem like realistic and fairly focused goals. There are other little bulletpoints in this plan, which are more general. These include working with the therapist to ensure the treatment is tailored to my needs (well, as much as CBT can be I guess), being given choice in my treatment, making sure the therapist takes into consideration things such as disability and religion (when suggesting treatments), keeping each other informed of things such as cancellations etc and attending every session if I'm able to.

So far, the main focus seems to be upon the Depression. I have far too many complications when it comes to the Anxiety, so I'm not sure if we'll even have time to begin to try anything for it. At each session, we have to talk about my suicidal ideations. I still find it very hard to open up or even properly understand what goes through my head when I have these thoughts. I may be fairly open, speaking about them on this blog and social media, but I don't like talking about them with someone directly. My therapist is keeping in contact with the crisis team, but I've not been referred again. At our last session, I said that I feel I'd be wasting their time, as I've not got any solid plans and I haven't attempted suicide. I have to just say whether I believe I'm at risk or not. I think she is reassured enough for now.

It was nice to get away from that subject for the majority of the last session. She said that she wanted us to try Mindfulness this time.

The therapist asked me to close my eyes, try and relax and concentrate on my breathing. Then, I was to focus on the things I could hear around me, what I could feel physically (the back of the chair against me, any aches, pains or stiffness etc). I also had to place my hand on my thigh and, as I concentrate on my thoughts, point to the left of my thigh to indicate a past thought, the middle for a present thought and the right for a future thought. I could open my eyes at points when I needed to (I did get very dizzy and thought I was going to fall off the chair quite a few times!). Once I'd finished this, she asked me to look round the room slowly, to bring my focus back, and then talk through my thoughts, feelings and anything I noticed.

I told her that I found it very hard to relax and I my thoughts did tend to change from one to the other, to the other, very quickly. I also got distracted very easily (there was a baby crying and some people having a loud conversation in the waiting room). When asking to concentrate on my thoughts, I often found that I wasn't completely sure of what I 'was' thinking. I'm sure it's impossible to be thinking absolutely nothing, but maybe most of the time (unless a very vivid idea occurs) our thoughts are mainly subconscious? Don't quote me on that, this is just me trying to understand it all! I didn't say this to her exactly, but I get a lot of muscle twitches with the Fibromyalgia, so I don't think I can ever sit completely still. The pain makes me tense up as well; which can't help the twitches much. Because of this, I feel very self conscious about closing my eyes and trying to sit still, while someone is watching me. What I did tell her was that I felt a bit silly about it.

She wants me to try and practise Mindfulness every day (even if just for 5 minutes). According to some research she found (I can't remember the title of the study, otherwise I'd search it out myself), it is supposed to be helpful for Depression, fatigue and chronic pain. I am definitely going to try and do this; although I think it might prove difficult at first. I'll of course blog about how I go, whether it helps any of the symptoms etc. It was nice to do something a bit different this time though.

In my next blog posts, I hope to keep you updated as to what I've been up to recently (appointments and otherwise) as well as more thoughts on the Work Programme, ESA assessments etc.

Tuesday 3 June 2014

Quick update


I've abandoned my blog for a while. I have had things going on, and things to talk about, but just no energy to form them into some sort of fluent post. I think it's all catching up on me, as I'm feeling very ill at the moment. I'm being bad and not pacing properly. I've been pushing myself too much, to do things. Mainly things that need to be done though. I can't rely on my dad for everything. It isn't fair on him, when he has so much on his plate already. I should be listening to my body (especially when it's practically screaming at me!) but instead, I've ignored it and carried on until I had no choice but to lie down.

I had a family meal to go to yesterday (Sunday), and I started the day feeling awful. There were relatives there, that I hadn't seen in years though. I felt obliged to make the effort and go. I'm really suffering for it today (and will be even more so, tomorrow), but I'm glad I went. It was nice to see my nan having a lovely time (it was her 80th birthday!). I couldn't eat much, and had to go to the loo about 4 times. That was a bit of a walk from the table, so I needed my stick the whole time.

I worried about what certain relatives would say about my stick. The last time some of them saw me, I wasn't needing to use it (or had too much internalised ableism to, I don't know). I don't think my invisible illness was so invisible this time however. I know I was visibly shaking, when I got there. Some of my relatives asked a few questions, but they were really understanding. No really awkward comments, which I was SO glad of. No one asked about whether I was working yet as well, which I was also very glad of.

Anyway, today I woke up in A LOT of pain, more stiffness than usual, cold sweats, dizziness, weakness, confusion and nausea. I should've stayed in bed all day really, but I hate not being nice and clean and showered. I dragged myself out of bed (about 3pm) to do that, and had a long rest before eating. I'm lucky that I'm physically able to do that when I need to, even when my body is screaming at me to rest. It's also my time of the month right now, and I get incredibly painful periods (is that another flipping symptom of Fibromyalgia? Probably...). I've been doubled over with pain today.

I'd love to have a better form of pain management. So far, the only pain pills I have, which don't give me awful side effects, are Ibuprofen (400mg). They just about manage to work on headaches, but don't even touch the surface of any other pains. If I've not already overheated (which I do very easily), I use a hot water bottle. It very temporarily helps my back, but it has to be quite hot and ends up burning my skin anyway. I suppose a burn is easier to cope with than the chronic pain I get though. Other than that, I just rest when I have to. The only time I don't feel the pain is when I'm asleep, so I cherish sleep* quite a lot.

*Sleep is a relevant topic I want to talk about in my next post, so I'll leave this here for now and try to get some sleep soon.