a week with ME … Q4

I know I keep my ‘fortnightly catch up …’ journal posts, but this blog post is a more in depth journal bog post about living with ME.

   . . .   a   w e e k   w i t h   M E   . . .   

day 1: Monday … 

morning time …

Morning time is extremely difficult for me. I am pretty sure it’s an extremely difficult time of the day for most people with any level of ME, but when you are at the severe end this could be the hardest part of your day.

In my case, it’s pretty much like Groundhog Day. I open my eyes, assess where hurts most, determine what kind of medication I might need and assess how to face a day going from the bed to the settee. And that’s about it, doing anything else is going to make me even sicker than I already am. This is my life day after day, month after month, year upon year.

As well, as if that’s not difficult enough to deal with, morning, is the time when everybody else is getting ready to fulfil themselves. All I can do is watch on … and imagine what I might do if I were well … or fantasise about what I’m missing out on …

And that’s only if I am not in unimaginable pain as is the case most days. Be it physical or psychological. Because, when I am in too much pain then that is what will consume me, which is how pretty much all of my days begin.

Overwhelming pain …

day 2: Tuesday …

eating …

Eating with ME, especially when the illness is severe, can be a logistical nightmare. At the worse end you are tube fed and at the better end of severe you can eat but not much and not without a very inconsistent price to pay.

Personally, I eat a fraction of what I used to eat (without the benefits of weight loss because there is none). Prior to mealtime and eating I have to assess how I am, what my HR is telling me, and ask myself how did this ‘food’ make me feel the last time I ate it. There is no just eating it, either because you like it or because it’s good for you or even simply because you just fancy it, everything has to be considered based on the past, present and future.

Every single morsel has to be thought about …

One of the worse foods for me now is raw foods, fruits and vegetables, which are the healthiest kind of foods that we all need. Yet, they all give me oral allergy syndrome and can make me feel weak and shaky and can make me cough for hours on end.

Breads, which is definitely one of my favourite foods of all time, can make me extremely poorly and put my system and body into overdrive.

If I eat, too early, too late, too little, too much, I pay a price. With extra illness, migraine, pain, allergies, digestive issues, nausea, heartburn, exhaustion, feeling weak and like I might collapse are just a few of the issues I have.

day 3: Wednesday … 

migraine …

If you have ever had migraine then you will know and if you haven’t you really don’t want to know and will probably struggle to comprehend what I am going to say regarding the condition. Migraine is more akin to severe headache with stroke and food poisoning than severe headache alone …

So please, whatever you do, DO NOT confuse migraine with headache, they are nothing alike.

The NHS describes migraine as: usually a moderate or severe headache felt as a throbbing pain on 1 side of the head. Many people also have symptoms such as feeling sick, being sick and increased sensitivity to light or sound. Migraine is a common health condition, affecting around 1 in every 5 women and around 1 in every 15 men.

This description, in my opinion, does cut it.

For me, a typical migraine is never moderate in any way and if I do have moderate ones I tend to classify them as mild because my normal ones are always always very severe. I can vomit every 15 mins, even when there’s nothing left to vomit, for at least ten hours straight, coupled with severe head / eye pain, vertigo, hallucinations, and an overall feeling of serious illness. So getting anti-sickness that works is really important, it can mean that the main migraine stage can be reduced to five hours over twelve. As well, there are the other terrible neurological symptoms that nothing fixes, except sleep. Plus, the pain is like nothing I’ve ever experienced.

I would like to be able to explain migraine in words but it really is something that you have to experience to understand …

day 4: Thursday … 

exhaustion …

When we talk about the exhaustion of ME, we are referring to the kind of exhaustion that you feel as not simple tiredness or an awful tiredness that is relieved by sleep. It’s an exhaustive tiredness that actually feels worse after sleep and that no amount of resting fixes.

It is an exhaustion of the energy system. If you think of it in terms of money balances. Some of us are wealthy and can’t even spend what we earn in interest and so our balance remains more than we could ever need. While others are always in deficit, which risks pushes them to bankruptcy.

Those with ME energy deficit are so close to energy bankruptcy that something as simple as standing will take them into overdrawn and the longer they stay that way, in overdrawn, the more it costs them. This cycle of being in greater energy deficit continues, because of how society is set up with the need to earn to live as well as other cultural systems that are in place, and so we become sicker and sicker to the point of living in a death like state. We tend to push ourselves to the point of not being able to do ‘a’ thing any more.

We are now experiencing a living death …

day 5: Friday … 

medical appointments …

These are one of the worse parts of ME to navigate.

In reality, when you are sick that’s when you need medical help but everything involved in getting it perpetuates the energy deficit spoke about in the above section.

Don’t go to the GP and you will be viewed as not as sick as you claim to be. Do go and you will expend energy that you do not really have and you will inadvertently make yourself sicker.

During ‘covid lockdown’ the way medical appointments changed likely suited those with ME much better than the former face to face methods. Yet now, after ‘lockdown’, I find I am ever struggling to access these virtual appointments. I find this totally soul destroying as it tells me that I am not believed, nor am I important enough.

I need medical care and medical help so very much …

Yet, I find myself in a catch 22 setup …

day 6: Saturday … 

night time …

For me, night time can be both the best and the worst …

At night I am often my physically best. Yet, I know for sure that once I have been to sleep I will feel utterly dreadful again and there are no guarantees regarding how ‘good’ or ‘bad’ this poorliness will actually be..

Good will be pain that my medications will actually work for.

Bad will be where I don’t know how I will cope while I wait for them to work, and this can often take several doses before I can cope.

Either way, (I had something I wanted to say here, flowing on from the above, but I’ve lost it … completely lost it … if it comes back to me I will update and add it in) …

Either way, I’m snookered and still suffering …

day 7: Sunday … 

loneliness & loosing family and friends …

Oh my … where do I begin on this one …

As I write this (2021), I am 59 years of age so you would think that I might have lots of support in the form of family and friends …

Sadly, this is not true for me …

Family: my dad, who was my best advocate and cared so very much, died of a massive heart attack when he was only 53 and my mum died aged 74 of lung cancer. I’m afraid our relationship, mine with my mother, was never really good, our roles were always switched, with me being mother and her my child. She also set up triangulation with my two sisters. Who are both done with me, their words not mine, for reasons I won’t go into but are as fucked up as their perspective on what I ought to allow … say no more. I do have an aunt, from my dad’s side, that keeps in touch and always offers anything I need, which I don’t ever accept but do value her love, kindness and concerns and more than anything I love how she keeps contact with me.

Friends: another area where I’ve lost most old friends who seem to feel that our relationship has been unbalanced and in my favour too because they have to put into more effort than I can. Over the years I’ve realised there is no need for me to feel guilt about this as I am seriously sick and they simply don’t realise this. I do have a few faraway friends that keep in touch digitally. I class the online social media friends I have as my main true friends and the two other friends whom I have known forever.

I would absolutely love to have a friend or two that checks in with me on a daily basis and that on my worse days does something kind for me, even if it’s just keep checking in and not expecting anything in return. This would feel so much like I did have friendship to fall upon in my darkest times.

But, sadly, I do not have this …

The closest I have to this is that I am married and so my husband will see when I’m really bad and I also have two grown boys, one of who will check in with me most days but always if I’ve been extra poorly on the previous day(s), …

what kind of a week was this …

This was actually a mixed week consisting of some of the main symptoms that I, and others with ME, suffer on a daily basis. I used this as an opportunity to advocate and hopefully enlighten you as to how difficult living with severe ME can be.

follow up …

I decided for this last quarter for each day to take, and discuss, one aspect of living with ME in order to try and help you understand just how difficult living with ME can be. I will write from the standpoint of myself as a person with severe ME, but this information can be transferred to the moderate and the mild, and maybe even the very severe, by recognising that to one degree or another everybody with ME suffers in much similar ways.

a week with ME … series schedule (March, June, September, December, to be posted either end of the corresponding month or at the beginning of the following month).

Let me know below what you think …

 fragmented.ME xXx