A first anniversary

So, today is the celebration of one year of being severely ill and disabled – of course, I mean “celebrate” in the sense of solemn remembrance, not the party-style “hurrah!” kind of celebration. On this day one year ago, I woke up and couldn’t walk, and the receptionist at my doctors told me they only did home visits “in emergencies” so I should wait until I got better to come in.

Still waiting.

Still think that suddenly not being able to walk counts as an emergency.

It has been a year of discovery, despair, and a whole lot of change in one go. I certainly had never imagined or understood quite the extent of what it was to be this ill, and completely misunderstood the levels of support out there. I had thought that if you became ill, there was a safety-net of doctors, disability aids, care, community and income support waiting to catch you. Alas, like the rest of the disabled in the UK, I am still falling.

But, I want to take time to be thankful that I’m still here, and to reflect that it isn’t all awful. I don’t want to lose years to some terrible disease; I want to be filled up with years of joy and new experiences. This year has been hard, and horrible, but not only hard and horrible; it has been filled with good things too:

  • I grew closer to my husband, and we celebrated our second anniversary
  • I got a kitten of my own, and got to watch him grow up into the lovable menace that he is
  • I visited Spain (twice!)
  • I ate all my advent calendar early (which I have never done before)
  • I learned a lot, about ME, CFS, benefits, politics, and the reality of how the world is
  • I moved to a beautiful new flat
  • I learned to knit and crochet
  • I joined Twitter and Pinterest
  • I have made some really good friends: Helen, Abigail, Jenny
  • I became a lot closer to some of my existing friends as well
  • I met lots of new, encouraging people: Jen, Anna, Katy, David to name but a few, and of course all the Foggies (which brings me onto:)
  • I got to be part of a great community of all sorts of friendly people
  • I took part in a Secret Santa
  • I watched an awful lot of TV (again, something I had not done much of before)
  • I got to go on a robot-stair-climber, a strap-your-wheelchair-in taxi, a lifting-truck-thingy and four aeroplanes
  • I got to see pictures of my brain
  • I got to take part in online lessons for subjects I have been interested in but never had time for before
  • I took part in National Health Blog Post Month
  • I managed to keep a blog going
  • I got to campaign for a lot of important things
  • I got to see God’s provision first-hand
  • I found a whole new set of people I really admire, for their tireless activism and information gathering, in particular Tom Kindlon, Sonia Poulton, Sue Marsh, Kaliya Franklin, and probably lots more
  • I got to spend Christmas with my husband’s family for the first time
  • I found a lot of interesting and relevant blogs to read, more than I can even keep up with
  • I drank a lot of tea
  • I memorised way more Bible verses than I have done in my life
  • I learned a lot about myself, and grew in a lot of ways

I’m sure there are a lot more great things that I did this year, but those are just some of the ones I feel happy about and can recall at the moment! I often feel like being ill has stolen my life away, and that every day I lie here is a day that I’ve lost, but this is a great reminder that I am still alive and still living – maybe not to the extent I wanted, but certainly nothing to be dismissive of!

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Coping (NHBPM 5)


Coping is really what people with chronic illnesses do best. We have to cope – we have no other choice. And by “cope”, we generally mean far less than being okay. For those on the outside, I will give you some insight into this code-word we use; “coping”.

“Coping” with cooking is often eating bread every meal because we can’t do anything more complex than opening a packet.
“Coping” with living by ourselves is often crying into a teddy bear because we don’t have anyone else to talk to.
“Coping” with benefit forms is often spending every day for a couple of weeks doing nothing but writing painful sentences, one at a time, so the form can be in on time.
“Coping” with self-care is often scrubbing our faces with a damp flannel before seeing someone, because that’s the most we can manage.

People hear the word “coping” and think it means “it’s a struggle – but we get there. We’re a bit tired, but we manage everything a normal person would. It takes a bit longer, but we can do everything ourselves”. Far from just being wrong, that assumption of meaning is used to cut people off from help they desperately need, and placate the consciences of those who might otherwise lend a hand.

Don’t be fooled – people hold onto their pride like nothing else. When someone says they are “coping”, very often the most it means is that they managed something without help – and that something might be a lot less than anyone could expect as a basic standards of living. Usually it indicates we just do without. It is a great mistake to assume that the easily given answer is the truth. Nobody wants to admit that they are incapable of doing something, or that they really, really aren’t coping. We just don’t. We’d rather lie about it and carry on in misery than admit that we just aren’t managing very well.

“Coping” is also used by us against ourselves. We think we shouldn’t ask anyone for help, because we managed something by ourselves; we think it would be unfair to put a burden on someone else when we “coped” so far. “Copers”, we are deluding ourselves. Look at it from the other side. Look at it as though you were the one asking someone else if they needed help. When they say “I can cope with making meals” but they mean “I eat uncooked things straight out of the packet”, would you accept that as coping? When they say they can cope with a benefit form, but they mean that they will literally be unable to do anything else for the two weeks it takes them to fill it out, and they will probably make a hash of it anyway – would you accept that as coping? Probably not, because your heart is bigger than that – and so is the heart of the person asking you if you need a hand.

I’m as guilty of this “coping” as anyone. I don’t like to admit that I can’t do things, and I need help. I don’t want to bother people with things that I can just go without entirely. I especially don’t want to complain when I know there are people worse off than me, who go with far less, so who am I to admit that I could do with more to survive? I actually go so far as to feel guilty when I have to ask for help with something – and I need help with most things. Yet, I know, if it was someone I knew needing help with these things, I would want to help them.

We need to realise that people lie to us, all the time, and we need to realise that we lie to ourselves all the time too. So, here are my hopefully-useful tips for today:

  1. Don’t listen to the lies. It’s okay to not be coping. It isn’t a mark of you as a person, it’s the illness or the situation. If anyone else was in your exact same situation, the illness or situation would cause them to not be able to manage too. It’s okay.
  2. I realise that a huge number of those in situations like this just don’t have any source of help available to them. But if you do, or even potentially do, then work out what help you need, or what you would be comfortable with someone doing – and then if opportunity arises, ask for it. Don’t be afraid to admit that you can’t do certain things any more. On the whole people will be pleased you are open with them, and happy to help you out. (Obviously there are exceptions, so if you know someone is toxic, avoid asking them).
  3. If you’re wanting to help someone who is sick, try to work out something you could do specifically. People are more likely to respond to a direct question like “can I take out the rubbish for you?” than “is there anything I can do?”.

I don’t think I have said anything that isn’t obvious; if you have any further tips please feel free to add them in the comments section.

Covers

Have you ever had a migraine? I don’t mean a bad headache, I mean a migraine; the kind where every noise, movement and glimmer of light causes agony. Where the only thing you’re capable of is lying as still as possible in a dark room until it goes away, or you die (either’s good really). One of those.

Well, one of those is how my body reacts to shopping centres, or anywhere bright and loud. Even in sunny Spain, where the heat makes me so much better, I can’t deal with that level of exertion.

Even though I go to some lengths to avoid those ‘extreme’ situations, it doesn’t keep me safe. I’m always in pain, always always always, and my best efforts only serve to keep it mostly bearable for most of the time. Any exertion makes it worse. The few things I do that look normal are down to me pushing myself to the limit, and always involve extreme amounts of payback later.

But, and this is the point, to look at me you would never know it; if you asked me how I was, I probably wouldn’t respond with a detailed list of my current ailments. Unless you knew me, you would have no idea.

It’s not just me that lives like this though- millions of us are struggling every day to just carry out the basics to stay alive. Just taking into account those well enough to get out of their home- mot everyone at the supermarket is finding it a breeze. Some people strolling down the street are finding every step agony like you can’t imagine. More people need to sit down on the bus than look like they need to. And this, it seems to me, is a big part of the whole problem. The way people appear to you to be, is not necessarily how they are.

Didn’t anyone tell you not to judge a book by it’s cover?

Think about it the other way around for a moment. How often is the way you look a reliable representation of how you are? How often are your actions a steady reflection of how you feel and what you are easily capable of? Think monday mornings; kids who need to eat when you have a stomach bug; hangovers on work days; elderly relatives always needing help; bus drivers bring rude; picking salad, not chips; another hour until you can reasonably have a cigarette break; smiling when you’d rather kill someone; not swearing at your mother; managing to look beautiful despite having flu; walking the dog in the rain. Think about why you wear makeup and smart clothes and conduct yourself well in public and get nervous about job interviews and first dates. I’m guessing you are not the person you present yourself to be, and that the way you feel is not accurately reflected by your actions.

We know that how we appear doesn’t have much at all to do with our health, emotions and intents – at least, not if we can help it. But for some reason we seem incapable of transferring that knowledge to other people. We can’t seenmto get it through our heads that someone might internally be different to their external appearance. It’s a big problem when it comes to social interaction, but more than that, it’s now ingrained into the systems which are supposed to protect us and save us.

The entire welfare system is now based on appearance, not actuality. It doesn’t matter if someone is actually about to die of a severely debilitating disease; if they appear to be healthy, they’re fine. People do remember that they can go from scary-nightmare-apparition to beautiful bombshell with nothing more than a shower, some painkillers, and 15 minutes of makeup- right? If you can do that, so can the lady opposite you who you think is faking cancer because she looks fine and has all her hair still.

More than that, the assumptions are built into the assessments in ridiculous ways. If you have stairs, you must be able to use them (i mean, who ever heard of someone getting ill after they had chosen a house). If you were forced to go to the assessment centre, you must be fine using public transport by yourself on a daily basis (even though to get there you needed constant help from a carer and the whole thing made you bedbound for a week). If you have baths you surely must be able to get in, out and washed without help. If you aren’t pale and sickly you can’t be ill- who ever heard of a disease that could affect your internal organs without making you look like death? If you can do something once, you can do it repeatedly indefinitely- who ever heard of an illness making you too tired to repeat an action. If you’re at 50% today, you’ll be at 50% tomorrow- whoever heard of a disease that varied? If you’re ill long term it’s because you’re not trying hard enough- who ever heard if an illness that wasn’t 100% cured by positive thinking and perseverance?

Ridiculous, but it’s what the judgements are based on. It’s all through society, ensuring the sick are treated like scum, the elderly are left to die without dignity, black people are searched more than white people, unemployed people stay unemployed, beautiful people make friends faster, and so much more.

The government needs to realise this and correct it. Because of so much… Because forgetting all this means they dehumanise people, real people, people like you- people like me. Because now, these people are dying.
But we need to, as well. Because the government saying to treat people like people will have 0 effect on a society who scorns them. Because the reforms that treat people like people will never happen until we want to stop dehumanising each other.

If how you look isn’t how you are, how much more does that apply to other people, the people whom we can never really know how they are. Reducing someone to our ill-founded assumptions dehumanises them, strips them of their selfhood and then calls them a liar for not conforming to who we decided they were. It has to stop, and that starts with you.

Doctor day

Friday (doctor-day) started off pretty badly – with my husband embarking on a 2-day mission to refurbish his digestive system (aka: norovirus). I guess I gave it him so… sorry honey!

So anyway – the doctor was a major answer to prayer. He didn’t treat me like I was making it all up or chastise me for daring to use a walking stick (something a lot of ME/CFS folk encounter is medical professionals who tell them that using walking aids is “reinforcing their false illness beliefs”). No – he actually listened, and then sent me for a whole bunch of blood tests. Yes! Additionally, the blood tests were doable on the day instead of me having to go back next week sometime, so that saves me another few days of resting up. The hope right now is that something on the blood tests will come back indicating it’s a fixible disease (ie: not ME) and I can be fixed up.

I go back in a couple of weeks to find out the test results, so keep praying :)