Wednesday, 14 October 2015

The things you don't see.

You may have noticed that I've been able to leave the house a bit more lately. After several years of living as a near-recluse, I have finally started to make enough of an improvement to regain a tiny sliver of social life. It feels amazing, and knackering too. More activity means worsening of my symptoms afterwards but it's a price I'm willing to pay every now and then to feel normal for a few hours every week or two.

I has spoon!

So here I am on my latest outing - a trip to the Firehouse with the in-laws to celebrate Mr Mook's birthday. It's been so long since I was able to go into town on a Saturday night so I went all out. I did my hair and even put on a little bit of make-up. As always, on the rare times I manage to venture into the real world, I was complimented on how well I look. "You don't look ill," is the standard reaction I receive, to which I usually resist the urge to reply "and you don't look stupid but appearances aren't everything." Instead, I try to smile in what I hope is an enigmatic fashion (but probably looks more like indigestion) and I say "Ah well, that's why they call it Invisible Illness." 

I know some ill folk get very fed up being told they look 'normal' because it can be a little patronising and also serves to belittle the many struggles we go through behind closed doors just to seem OK for an hour or two at a time. Personally, I'm fond of compliments so I'll take them anywhere I can get them. It does however, raise issues for me as to how much I actually show others of my day to day life. I prefer to focus on the positives, the milestones and achievements I reach on my quest for wellness, no matter how small or trivial they may seem. But therein lies the rub. If all I ever show the world is those glimpses of me at my best, how on earth can I expect others to truly understand my illness or what it takes to live like this day after day? It's no wonder people tell me how well I look. They don't see the flipside of being out of the house for an hour or so. They only see me when I'm at my absolute peak, never mind the days of preparation and resting it takes for even the shortest outing. They're not there for the days following, when I'm bedbound and in pain just from daring to enjoy myself for a while.

Not happy about having to open my eyes. IT'S TOO BRIGHT!!!

So let me tell you. Not for sympathy, mind - I've had enough of that to last a lifetime. I don't need or want any more 'you poor thing' or 'oh, how terrible' because, yes it is terrible, but life can be like that. We all have trials and tribulations but we get on with things as best we can because that's the only option. And please don't feel sorry for me, because aside from the feeling like poo and the not-really-leaving-the-house-much malarkey, I have a very enjoyable life thank you very much. No, I tell you because there NEEDS to be awareness about ME. We need funding, research, treatment, certainly a cure would be nice, but most of all we need UNDERSTANDING. We need you to realise that just because we look ok does not mean we ARE ok. Just because we make it out for a couple of hours does not mean we are magically better and able to do this every day. I wish we could but we really can't. It takes practice. It takes discipline and an iron will. It requires a whole lot of rest and planning and a healthy dose of guts.

This is the part you don't see; the several days of rest I need before going anywhere new. The phone calls and online searches my husband makes to check accessibility and dietary requirements. You're not privy to the conversations we have, planning every aspect of the trip - what I need to take, how I'll get there, ways I can rest if I need to, how to get me home again. Decisions need to be made about whether I need my wheelchair or just my walking stick. It probably doesn't occur to you that I have to plan my bath for the day before because that in itself is a major energy-burner and not to be attempted on the same day as anything else. Getting ready is also a long, drawn out process. Whatever can be done in advance, is. Whatever can't is spread throughout the day with plenty of rests in between. Once ready and the time comes to leave, you may not realise that car journeys involve a travel pillow to support my neck, plus ear defenders and sleep mask to cut out sensory stimuli. You can't always tell from the photos that I always have my earplugs in and that often, I'm the idiot you all laugh at for wearing sunglasses indoors, at night. I'm not trying to be Kanye West, I'm just trying to protect my light-sensitive eyes for as long as possible. It's the same reason I have to blow out the 'atmospheric' candles they always have in restaurants. The flickering of the flame hurts my eyes and sends my brain into overload. You might not think of me when you joke about Gluten Free being the latest trend, how it makes most of the menu out of bounds and that even something I can have, like fries, is always tainted by being cooked in the same oil as the food with wheat in it. I love potatoes. I love the myriad ways they can be cooked. Is it too much to ask restaurants to consider at least ONE way of serving them that doesn't include cooking them in wheaty oil? I'm starting to feel like I'm on the Atkins diet here....... And don't even get me started on the refusal to offer gluten free bread as an option. We have THE best gluten free bakery here in Bath, so there's NO excuse other than apathy. Yes, 'Gluten Free' might be a case of zeitgeist and bandwagoneering to some, but for me and my fellow chronically ill chums it's a necessary evil to avoid several days of liver and kidney pain, legs that don't work, and a headache straight from the bowels of hell.

Kanye in a taxi. I am SO EXCITED to be in a taxi again.

I know it sounds like I'm whinging here about how hard it is for me, and it IS hard, but I do all these things joyfully. Joyfully because I know what it's like to be too ill to leave your bedroom, too ill for phone calls, too ill for visitors. I have lived through those dark, dark days and I am determined never to go back there again. It sounds counterproductive I know, to put myself in a position that will make me more ill and send me back to a quiet, dark bedroom for a few days however if managed properly, there is no lasting damage to my health. If I were to try and live a normal life, to push my limits all the time then I would end up making myself very ill and it would take me years to recover. That's how I came to be housebound in the first place. Luckily, I know my body better these days and I know how to deal with the after-effects of overdoing it. I know I have to rest up in that dark, quiet room until I'm over the worst. I know it'll take me as long as it takes and that there's no point planning anything for a good week after any outing. As I write this, it's Wednesday and I'm still not back to my usual levels of health after Saturday's meal. I'm nearly there, but the slightest wrong move will have me back in bed and in pain for even longer. 

I hope that by sharing this with you, it might give you a better understanding of chronic illness. Of why we might look healthy even though we are anything but. It might help you realise that we are not being anti-social, picking and choosing the events we attend, using our illness as a handy excuse to get out of the things we don't want to do. That is simply not the case. When you've been stuck at home 24/7 for weeks on end, you will literally turn up to the opening of an envelope if your health will allow it! I also really hope that you don't mistake this for a 'woe is me' attention-seeking bid because, as anyone who spends time with me these days will verify, I've got this whole M.E lark down to a fine art. It rarely gets me down these days - I've managed to adapt my life to make every scrap of energy used as joyful and entertaining as possible. Despite the physical pain and anguish my outings cause, I do it all willingly because the excitement at being out of the house overrides everything else. I guess that really, I just wanted to share with you just how much of an achievement it is for me to be able to do these things again and that even though all you might see is me grinning like a fool in a series of selfies, there is a lot behind the scenes that you don't see and that unlike you lucky people, I can't just skip to the good bit.

The perks of recovery time - a Bernie cat to snuggle with.