Too busy to be sick

I’ve got a big weekend planned. Well, it’s probably not that big a deal for most people, but for me it’s way more than I should be doing. Starting tonight I am heading to Brighton where I will meet lots of people that I have been talking to on twitter and then we are planning to spend a day discussing politics, political engagement and other quite interesting things.

It doesn’t seem like much effort, does it. But Ihave to carefully plan how this will work. To start with, I have all my preparations. I will spend this afternoon collecting medicine from the pharmacy to make sure I don’t run out, packing all the equipment that I need to fit on my bike, re-wiring the satnav power connector on my bike, finding time to squeeze in a shower, draining in itself, and fitting in a visit to the doctor which has been planned for weeks. After all that, I am going to spend three hours riding my motorbike to Brighton. I will be fine on the motorbike as it isn’t that tiring at the time. That pain will come later, which is why I am travelling today – so that I can spend Friday recovering from the preperations and travelling. Fortunately I have somewhere to stay and rest. (Thanks @QOFE!)

Then I’m hoping to meet some twitter friends on Friday afternoon / evening, and get an early night (Hah!) before spending Saturday and Sunday with interesting people and discussions.  I suspect that I will end up travelling home on Monday because I will have run out of energy by the end of the weekend.

After all of that, I am fairly sure that I will not be moving much from my bed for a few days afterwards. I know this because after ten years of illness I can judge how much energy I can expend without going too far. As I explained in my page about M.E, there is a vastly disproportionate payback for any energy that I do use, and I am certain that I am going to use way more energy than is sensible this weekend. This is my choice – for the sake of joining in with others and having just a little bit of a normal life, I am making a deliberate choice to overdo it and to crash next week. This is what people don’t see when they say stupid things like “but you don’t look sick!” or “You’re looking well.” This is what the DWP, ATOS and the work capability assesments don’t take into account. Yes, I can look normal, for a little while. I can do some normal things, to some extent. But afterwards I will pay. I will pay a lot more than any healthy person might expect. Imagine if every time you went away for a weekend, you have a week off work with the flu, so severe that you are rendered helpless, and you might start to understand just a little bit. I don’t have to do this, of course. I could stay here, split my time between resting in bed and sitting in a chair, maybe a small trip to the shops. I could choose not to see any friends, and preserve the tiny bit of energy that I have.

This is my choice – I will push myself for the next four days. I will damage myself and I will be helpless and in pain afterwards. But I happen to think that it will be worth it.

Panic!

I had a panic attack this morning. I don’t make a habit of them, this was only my second ever. The first one happened a few years ago when I had been given amitriptyline to try and reduce the pain I was in. The first day after I had taken it, I ended up in a complete panic, hyperventilating, scared and twitchy. I didn’t know what the hell was going on and so I called 999 to ask. They sent me an ambulance, and a wonderful paramedic who spent an hour holding my hand and calming me down while they took me to hospital. I’m slightly ashamed of tying up those services for a mere panic attack, but like I say I had no idea what was going on and I simply called for help from the only place I could think of.

Today’s attack then. I had gone to bed early so that I could sleep before Portal 2 was released early this morning. Amazingly, I had actually slept, although two hours after going to bed. I woke up with my normal selection of pain and inability to move much, took my painkillers and waited to feel better. While I waited I looked at twitter, and I quickly noticed that I was very irritable and confrontational. I took offence at several messages that weren’t even aimed at me, had a rant and started an argument.

And then as I decided to get away from the internet before I lost all my friends, I felt my mood dropping . A bit like when I hit the low points of depression but even more sudden than that. Then I was crying. The hyperventilating started. Feelings of despair mixed with sheer panic. Why? I have no idea. All I wanted to do before that was wait for the painkillers to work and then play Portal 2. What I had actually done was annoy lots of people then fall apart mentally.

Fortunately my wife came home at that point and a thirty minute hug managed to calm me down. She read out the messages that my friends on twitter had sent me (I had mentioned that my mood was dropping before I became frozen by the panic) and told them that I was all right. Finally I was stable enough for her to go and make me a cup of tea.

That was all a couple of hours ago. Now, I’m exhausted, shaken, in pain because the stress aggravated everything, and still irritable. I’m ranting here because quite honestly, it helps even if no one reads it. If you’ve got this far, thank you for sticking with it.

A kind friend sent me this while I was panicking, it helped. http://www.mindfields.org.uk/blog/?p=174

All in my head

In one of those odd random blips of popularity, my description of M.E. has been circulating around twitter and Facebook today. I found it quite interesting to read the way people described what I had written. People identified with it, and said that I had described the symptoms well. I found that comforting, in a way, because their identification with it means I haven’t imagined everything. When enough people tell you your illness is all in your head, it’s hard not to question if it is. Even to the point of wondering whether I’m saying I need to rest because I really need to, or because I’m lazy.

M.E. has a long history of controversy. Until very recently, no physical markers have been found for it. Diagnosis has been based on description of the symptoms and by ruling out everything else. Because there is no way to be certain of the diagnosis, public attitude to M.E. has been poor. Names such as “Yuppie Flu” are derisive and contribute to the attitude that people with M.E. are simply faking their illness, and are lazy or work-shy.

Many doctors have held the opinion that M.E. is a mental illness. They conclude that the fatigue and the pain are due to depression, and hold the belief that only therapy such as CBT and a slow increase in activity is necessary to cure the patient. In actual fact, the World Health Organisation classifies M.E. as a neurological disorder under Diseases of the Nervous System, G93.3. The Department of Work and Pensions also categorically states the CFS/ME is physical. Despite this classification, many doctors still believe that M.E. is purely a mental illness.

What is the impact of this belief? One of the defining features of M.E. is that fatigue is not explained by exertion, and in fact is out of all proportion to any activity. In my experience, the best management strategy for M.E. is Pacing. It involves making an effort to stick to a timetable of rests and a set level of activity, and working out how much activity can be undertaken and how much rest is necessary by gradually increasing activity until the maximum level is found, and staying at that level. If pushed into too much activity a person with M.E. will “crash” and may be completely incapacitated for a long time. The standard treatment for M.E. as a mental illness is CBT or GET which will push a person far beyond their safe limits.

Treating M.E. as a mental illness also appears to attach a stigma to it that just shouldn’t be there. Suppose for a moment that M.E. actually is a symptom of severe depression. It may change the treatment, but would it change anything else about the abilities of a person suffering from it? Would it mean that it was OK to tell someone “it’s all in your head” and “snap out of it”? Of course it wouldn’t. Depression itself is a real illness, needing treatment and medicine. Someone with depression cannot simply “snap out of it.” There are M.E. sufferers who are also depressed – I am one of them – but it is important to distinguish one from the other. I have had M.E. for ten years, and depression for a few months. It would be surprising if I didn’t get depressed at some point given the situation I am in.

If I could choose to be better, I would. Of course I would. I’m currently useless, stuck at home, in bed most of the time, my business is failing because I can’t work, I can’t even do any housework. I WANT to be well. I want to be rid of the crippling pain, the migraines, the dizziness, the insomnia. I want to be able to walk, to run, to ride my motorbike. So don’t you ever tell me to snap out of it. I might just have to beat you with my walking stick, just as soon as I find the energy.

Worth

I haven’t written a blog post for a couple of days. I feel bad about that. I feel like I have let people down because I know that I have expectant readers, but I also know that they will say it’s fine. I also feel like I have let myself down, and that one is true. You see, writing on my blog is therapy for me. It allows me to collect my thoughts, and arrive at conclusions, it gives me some purpose while the only other thing that I have to do is lie in bed and think about pain or get depressed. It also makes me happy when my blog helps other people to understand, or provide a way for other people to get their friends to understand them. It makes me happy when I look at my stats and see that one or two hundred people have read what I wrote, because that means it was worthwhile.

I am reminded of a character called Nutt from Terry Pratchett’s book Unseen Academicals. Nutt is an orc, although he has been told that he is a goblin and sent into society to see if he will fit in. Nutt was told that he must strive to acquire worth, and throughout the book he constantly asks the question “Have I worth?”

Being sick at home has stripped me of the things that I felt gave me worth. I can’t work, my father is running our business without me. I can’t even answer his questions when he comes to me for help. I’m not a Christian any more so I don’t lead worship (the music) at church. I’ve not been playing computer games much until this week, so I have been away from the gaming clan that I run and not there leading it, organising it. All these things gave me a purpose, and a sense of achievement and they have all been on hold. Even my internet-based political activism has been wound down slightly this week, as I have had too much brainfog to join the Armchair Army in bombarding everyone with messages about the NHS changes.

I know that it isn’t really those things that give me worth, that each person has worth in their own right. I think what I really need from my activity is purpose. If I can find a purpose in my activities, especially if they are activities that I can do while sick or recovering, then I can ignore some of the bad stuff in my life.

This has accidentally turned into an honest insight into my mind. I’m not actually sure that I want to post it, but I’m going to anyway. Because then I can feel better for having written something for my blog. 🙂

Stop the world, I need a rest!

While I am sick at home the world doesn’t stop. There are weddings. There are big shows, music festivals and other events. There are protests that I want to attend. There are real-life meet-ups for groups that have been chatting over the internet. My intended schedule for the next month is hectic: First it is the Prescott Bike Festival, to raise money for Blood Bikes. The following weekend some friends are getting married, 180 miles away from here. The week after that, we’re up in court for non-payment of council tax. (Which we disagree that we owe, due to benefit chaos caused by attempting to do the right thing.) Over Easter my wife’s parents will be visiting, and we will have a big dinner together with my parents. The weekend after that I am visiting Brighton for the weekend to meet up with other politically aware people I talk to on twitter. Then there is a gospel choir performance a few days after that. On top of all this, I have jobs that I need to do such as some work on my wife’s motorbike. Oh, and I’m moving house in the next two months.

It just isn’t going to happen like that.

At the moment I can spend around eight hours per day out of bed, and not every day. I can’t predict when I can get out of bed, or when I can do anything that is expected of me. On many days I can choose to either have a shower, OR to wash the dishes, OR to do other things that I want to do. Given that, how can I do any of the big things I just listed? In reality, I have to prioritise. I have to choose what is viable, and what is really important to me. I have to acknowledge that a really big weekend will wipe me out for a week afterwards, likely leaving me unable to even get my own food and drink and struggling to reach the bathroom. Out of all that I listed above, the bike festival will depend entirely on how I feel that day, it is not practical for me to get to the wedding, since the travel and sleeping on a friends floor will destroy me, and I can’t afford it anyway. The visiting family, I can just about handle as I will disappear off to rest lots while they are here. The trip to Brighton, I am going to manage if it kills me. Unfortunately, it just might.

This is the reality of long-term sickness and disability. This is #disabilitynormal

A personal update

I know a few people are concerned about me after reading my recent blog posts, so this is an update on my health and situation. It’s quite detailed so you might not want to bother, or just skip to the summary at the end. I’m also writing this partly for my own record.

Pain and fatigue

I’ve been taking pregabalin (Lyrica) for a few weeks now. For the first week I was quite ill, with dizzy spells and lots of fatigue. During that week I spent several hours in a car and stayed with my wife’s parents, and for a few days after we returned home I couldn’t really get out of bed because of the fatigue. The pain started to ease after that, and within two weeks of starting pregabalin I was nearly pain free. I also had a lot more energy and started to spend twelve hours a day or more out of bed and sitting on the sofa or at my desk.

Unfortunately that was short lived, and the burning pain started to creep back, and I had more fatigue again. The levels of pain are low enough to handle with paracetamol and codeine, so this is what I am doing rather than increase the levels of pregabalin and risk more side effects. I’m currently able to spend about eight hours out of bed, a few days per week. I’m crap at pacing myself, but if I can impose some self-discipline then I might manage to build that up.

Diet

I started following the Atkins diet at the start of March. Atkins, although considered a fad  by many, is actually thought to be quite good for diabetics. It had an instant effect on my blood glucose, dropping down to 4 – 6 mmol/l. I dropped my gliclazide which I had previously been taking 120mg / day of. After two and a bit weeks I was very very fed up with Atkins, and I had lost only 1kg, so I stopped the diet and decided just to follow a reasonably strict normal healthy diet as recommended in my diabetes books. At this point I have resumed taking gliclazide again, but less than before, and my blood glucose is within normal ranges most of the time. I’ve also lost 2kg since stopping Atkins! You can see on this graph where I was on the Atkins diet, and how bad I was before I started that.

Blood Glucose Line March 2011
Blood Glucose Line March 2011

Depression

I posted an article about depression just over a week ago and worried a few of you. I have been really depressed since before Christmas. I seem to have dips in my mood of just a few hours, sometimes even just one or two and at these times I can be suicidal. Most often the dips leave me lying there unable to make myself do anything apart from concentrate on an overwhelming sense of dispair. My friends on twitter have been really helpful in getting me through some of those dips. I have told my doctor about everything and I have been taking Duloxetin for the last month. It clearly hasn’t worked and so today my doctor has switched me to Citalopram.

Benefits and Housing

I wrote an email to my MP about our chaotic situation with our benefits. He has written to our council asking them to look again at our claim, but as yet we have not heard back from them. As far as we know, our court date is still going ahead. In the meantime, my wife has been hired for a full time supply teaching job until the end of the summer term, which is fantastic. It should mean that we can pay the council tax to stop the court case now, and hopefully apply the payment to future council tax when they finally realise that we shouldn’t have had to pay it in January.

Since our landlord decided to kick us out and gave us two months notice we have applied to the local housing scheme. I’ve been really happy to find them moving quickly – because of my health, and our being evicted, we have been classed as “Gold Plus” priority for a new home. The only difficulty now is that they have hardly any homes to offer.

Summary

In summary then, my pain is under control, my diabetes is just about under control, we (probably) won’t be homeless, but I’m still suffering from the depression.

Concealing the pain

“If human beings don’t keep exercising their lips, he thought, their mouths probably seize up. After a few months’ consideration and observation he abandoned this theory in favor of a new one. If they don’t keep on exercising their lips, he thought, their brains start working.” — Hitch hikers guide to the galaxy

“How are you?” my friends ask. It’s a standard thing to say, a social convention. It’s a convention I find incredibly difficult. I can respond with a lie, of course. I’m almost expected to. “I’m fine!” or “Not bad” will fill the gap in the conversation and allow us to move on.

But I’m not fine. Those days I call a good day? I’m still more sick than a healthy person can imagine.

I say I am recovering, and I am. I am much better than a few weeks ago when I could not get up from my bed, could only lie there crying with pain. Now I can get up, sit in other parts of the house. Last week I even went for a ride on my motorbike! But yesterday when my sister came over for a coffee I nearly fell over after opening the door. I staggered away and managed to stay on my feet by grabbing the walking stick that I keep next to the door. Sitting on the sofa as my sister made the coffee, I was firmly told to stay sat down every time I tried to get up to do anything, because she knew just how ill I was.

A couple of days ago some friends came to visit us and stayed for 90 minutes or so. To begin with, I looked normal. I told them how I was feeling better, how I was improving. Half way through their visit, I got up to get something from my bedroom. I was unsteady on my feet, so that the second time I went to get something I was told not to bother. By the end of the visit, I was very visibly exhausted. Barely standing, face contorted with pain and fatigue. My friends concern was obvious.

Those two examples aside, who else would know what I go through? How would anyone see what I look like when so sick? I only go out when I am feeling good, so others will only ever see my absolute best and most healthy points.  If they don’t come round when I am struggling in the morning, if they don’t spend 90 minutes with me until I am completely drained, they will just see a healthy person. I compound the problem by telling others that I’m fine or that I’m not bad, so they have it by my own admission that there is nothing wrong with me.

I highly recommend this blog post by Sue Marsh – The Sickie Friend Slam-Dunk. She explains how even people that see some of her struggle still judge and condemn her. I put it to you that if you know someone that says they are sick, that you don’t know the half of it. You have no idea what they go through when you aren’t looking. You don’t see them crying out in pain, falling over, failing to get to the bathroom in time, the mountains of pills that they have to take. Don’t judge based on what you see. And next time someone says “I’m fine!” just have a think about what they really mean by that.

Guest post from @apricotmuffins: On Health

This is a guest post from my sister, who you can find as @apricotmuffins on twitter.

I’m healthy.

I’m not bragging, I’m stating a fact. My body works pretty well for me, and through no fault of my own. Sure, there’s some issues here and there, I have slightly dodgy knees, but nothing I can’t cope with. I get a knotty back, I prefer to avoid bread because I get awful heartburn on occasion. I have a disgracefully irregular period, but that’s about the height of my health worries. All of those things are small fry, they don’t affect my ability to function on a day to day basis. They don’t make me stop and think seriously about whether or not I can do something. I can push myself, and like a rubber band I’ll spring back quickly with little consequence. I’m sure a few of you reading are the same. Your body does not give you too much trouble in your daily life and you are able to put any health problems you might suffer in the background for the most part.

Not many people, I think, realise how lucky they are to be healthy. To not have to worry about how much they can do, how far they can push themselves and what the consequences of doing so will be. To not have to plan and prepare every single detail of their life, to be mindful of places they can’t access, things they can’t eat, activities they are incapable of.

I can have a dodgy sleeping pattern and all it really does is make me a little more tired the next day. I can sit in a crap computer chair for hours and all I suffer is a sore bum and a need to stretch. I can push myself to run and exercise and use my body, and feel the air rushing through my lungs painlessly and easily, to feel the thrill of my heart racing and my blood pumping. I can dream, and think, and muse, without my nightmares or my sadness encroaching on my mind to a point of debilitation.

Know this: at any moment, of any day, you can have your health snatched from you. That thing, that allows you to function without worry, it can be gone in an instant. You might see it coming, a slow descent into health problems which build up to a point of true disability, or a quick accident, a breaking point in which your whole life turns on its head. You will not always be so fortunate as to not suffer long term or even permanent health issues. Age will get us all eventually, but along the way there are many opportunities for things to go wrong.

We, who are healthy, are extremely privileged. Call it a gift, if you like, call it chance if you don’t, but don’t ever think you’ve earned it. Ever. Even people who work to maintain their health start off in a position of being able to do so, many people never even had that. Many people will never be able to ‘pull’ themselves out of bad health because it simply is not an option. It’s a rare and fragile thing, to recover fully from a major health issue. It takes many doctors and experts and help from outside, and even then people might never go beyond simply working around things rather than through them.

Please, I beg you, don’t take your health for granted. I have been doing so for years, riding on the fact that I’m young and fortunate. Its taken seeing the deep suffering of my loved ones for me to realise I will not always have this blessing. To realise that I’ve been squandering it, abusing it, relying on it to shore me up as though its a strong and definite thing, when its anything but.

Please, do those things you keep meaning to do but never get round to. Take up that sport, go for that walk, sing, dance, be creative and fearless. Use yourself and the greatest tool you have to enjoy life. Because when you lose that tool, you’ll realise what a gift it really was.

Email sent to my MP over housing benefit chaos

I sent this email to my MP to request help with our chaotic benefits situation. I thought I would put it here as it may be interesting to some of you.

To: Peter Luff MP
CC: South Worcestershire Revenue and Benefits Shared Services

Dear Mr Luff.

I am writing regarding our situation with Housing Benefit and Council Tax Benefit. Our reference number for this is xxxxxxxxxxxxx
We have repeatedly requested that our benefit paid since the last tax year be re-assessed in full. This is because of reasons set out below. Most recently, we have been sent a letter (dated the 15th of March 2011) which stated “As your household has had many changes to your income over the last twelve months resources do not allow for further analysis of each period to be made.” This is absurd, as we requested this analysis precisely because our income has had so many changes, and we are certain that mistakes have been made. This same letter included copies of all our award letters for the past year, a bundle half an inch thick, with the implication that we should work it for out ourselves. This despite us having no information as to how to calculate these benefits.

Over the past year my wife, xxxxx xxxxxxx, has had a mixture of Job Seekers Allowance and temporary work from several different job agencies. Rather than stay on JSA she has continually made the effort to take work whenever possible, and since little teaching work has been available much of what she has done has been cooking and cleaning work. She has followed all the rules, and all work done has been reported to the Job Centre and to the Council Hub, and payslips have been copied to both continuously over the past year.

As a result, our housing benefit, council tax benefit and job seekers allowance have varied wildly. There has been confusion on many occasions due to her having multiple employers and we have even had benefits stopped while they await P45 forms that don’t exist because she has not actually left any agencies to work for another. We have been over paid and had it clawed back, underpaid with no apology for the times when we have missed our rent as a result.

I myself have had no income because I have been running a startup company which has not yet paid wages, and since Christmas I have been seriously ill and confined to my bed after an M.E. relapse. I am claiming ESA for this.

We are being taken to court on the 13th of April for the non-payment of council tax which I believe should have been covered by council tax benefit since in the period covered my wife had hardly any work and I was sick. This impending court case is causing a lot of stress for me and is having an impact on my recovery.

We have tried to play by the rules, take work whenever possible (I even started my own business as M.E. makes me otherwise unemployable) and report all income, but we are being penalised for it. It would have been easier for both of us to stay on Job Seekers Allowance and have a nice stable income with no shocks.

We would be grateful for any help you could give in getting our income and benefit payments for the last year properly assessed using all the available information. I would also like to thank you for intervening when my wifes CRB check was delayed for several months, as without this she would have had no teaching work at all.

Thank you for your time.

I’m sorry, I forgot.

I’m sorry, I forgot. People that are sick or disabled are supposed to stay miserable as a punishment for being ill. They aren’t allowed any books, games, music, TV, trips or holidays because that might cost the taxpayer money. They must lie in bed staring at the ceiling for the rest of their lives.

Or not.

Someone found my blog today by searching for “should i feel guilty by going to the shops while i am receiving dla”. Someone that I went to school with made a snide comment on Facebook this morning about people who go on holiday while unfit to work.

What is wrong with people? Should illness or disability mean enforced misery as payment for being kept by the state? Is it forbidden for a sick person to stagger to a nearby restaurant or pub if they are having a good day? If they find a bit of extra energy are they not allowed to do the shopping themselves instead of dumping yet another task on their spouse as usually happens?

This attitude, pushed by the tabloids and now by conservative government ministers, is outrageous. Becoming ill cannot mean a complete loss of quality of life, or you might as well just shoot us all now. The welfare system is for everyone whether they have paid tax in the past or not. And most of us have paid tax in the past. Those that haven’t have family that have. What right have the government or society got to renage on the deal? The deal is, we all pay into the system, and when someone has need, the system looks after them. Including leisure pursuits.

Our society disgusts me. People are vilified for simply being sick or disabled. People shout abuse in the street at those using walking sticks or wheelchairs. Those with disabilities don’t dare to push themselves at all, even if their condition varies. Many people are capable of riding a motorbike or mowing the lawn one day but cannot move the next, but if they dare to try anything then they live in fear of a neighbour telling the DWP. (Who don’t understand variable conditions at all.)

All this for a measly 0.5% that are actually faking it. Are you part of the problem? Are you making sick people stressed and setting back their recovery? Are you hurting 99.5% of the sick and disabled because of you unfair prejudice and your sense of entitlement?

Oh, and by the way, DLA is paid to anyone that needs the help, working or not. Of course you shouldn’t feel guilty about going to the shops.