It never gets easier

myalgic encephalomyelitis

I have debated back and forth about whether to write this post because I’ve been away from the chronic illness community a little bit over the past year and didn’t know whether I was going to do anything for this year’s M.E awareness day. But even if it’s something that I don’t publish I think it’s something that I need to get off my chest at least for my own benefit.

These past few months, well since before Christmas, have been the worst of the whole time I’ve been unwell and I just want to say that even though I’ve been unwell for 6 years, this really does never get any easier.

One thing M.E sufferers can experience is something I refer to as a ‘crash,’ which is separate to a flare or a relapse. I would define a crash as a shutting down of your body but your conscience stays awake. As though someone has pulled the plug to your power supply and you instantly shut down. This can be caused by many different things, depending on what your body is reacting to. Mine tends to shut down with loud noises or music, particularly anything bassy or on surround sound. The vibrations from them rip through my body and cause it so much distress that it sends me into crash mode to try to cope. It’s a modern day chronic illness version of our fight or flight instinct. I’ve written a more detailed post about crashes over on my old blog, which should you wish you can read here.

Every time your body goes into complete crash mode, where your body shuts down but your mind is conscious and you can’t scream for help or communicate with someone to hold your hand is as scary as the first time it happens. You fear to let go or breathe out because you don’t know if you’ll be able to breathe in again. You cling on despite being terrified and genuinely feeling like you’re slipping away or dying. It’s not something you get used to or fear any less each time it happens. Each time it is raw and real and terrifying. Could you imagine yourself getting used to something like that?

And this is something that has been happening a lot lately. I hate it because no matter how much I try to manage my illness and energy consumption, crashes are often beyond my control. A reaction to not what I’m doing as such but how my body reacts to what is going on around me. And that can be hard to bear.

And of course, when you have a chronic illness (or a few chronic illnesses) there’s a chance that you will become progressively worse, or develop symptoms that you have not had before and even find yourself being diagnosed with even more chronic illnesses as has been happening to me over my six years of being unwell. And that in itself is a scary prospect as you live even more in the unknown.

Having said that because of course, you are already so unwell it can at times take things getting dramatically worse for us to think okay this is not normal (for us as an individual) and seek medical help. It in a way it has to be out of the ordinary, something we are not used to.

There have been times that because things have become so bad my doctor has sent me to hospital or I’ve been carted off in an ambulance with paramedics rushing to our house. Which of course to me are really scary times. And yet, others seem to think because I’m already ill it has no affect on me. That it’s par for the course as it were. But nothing could be further from the truth.

In fact, I’d say as things go on and get progressively worse they become harder to bear. The burden increases and in turn, you feel like you become more of a burden to others as their duty of care increases. And that can bring with it feelings of guilt as well as feelings of ineptitude that you can do so little for yourself. There comes a point when you find yourself saying “I just wish I could do a wee on my own.” There’s a very real fear that this is your new normal and that things will continue to get worse and worse.

I think the misconception is that somehow that you get used to being unwell, that somehow it just becomes normal. While to some degree you do get used to it a little bit, I mean it’s not as if you forget you’re unwell and wake up in the morning expecting to go to work and like I said you only really seek out more medical advice if things drastically change, it definitely does not become easier and you do not get used to it.

And yet sadly for many, myself included, what we see is our support networks becoming smaller and smaller the longer that you are unwell. Over time it is as though people start to see illness rather than a person, you become synonymous with your illness even though you yourself feel as though your illness does not represent the person that you are. And of course, sufferers have feelings, feelings they can’t always process because of physical symptoms or being simply too exhausted or feelings and thoughts that roll around in your head for weeks on end because you have so much time to ruminate. You need a support network more than ever and yet in many cases that support network is diminished in size or sadly for some none existent. And yet you can be on social media and see that someone has a cold or something that will heal/ get better in a short period of time and see sometimes hundreds of messages of sympathy, which can put you on even more of a downer.

So my advice is if you know someone with a long term condition please remember the person behind the illness. Remember that even though they suffer every day and might seem so strong and like they are coping admirably, that they will have days when they’re not coping. That any hospital visits or procedures are still a big deal to them and a simple “good luck” or “thinking of you” message can mean the absolute world. That no matter how many years they have suffered each day is still a struggle. That we face a future that is incredibly uncertain and that can be a very scary feeling.  Put yourself in their shoes and ask yourself what you would want from others. You have the power to influence someone’s day for the better, it will cost you little but be of incredible value to the recipient.

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