Category: M.E. chronic fatigue syndrome

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September Health Update

I got a letter today from the specialists in CFS (condition I have) and it effectively said, after a year of waiting … hey, waits for our appointments are really long, here, have this leaflet!

Guess I have to love that I have the NHS here but, the slogan is … free at the point of need.

Except, this used to be the case at inception in 1948. Over the years this has been eroded down to ‘if you live in the right place, at the right time, and have some money, it’s free at the point of need’

The reality is, it’s now rarely entirely free. Gone are the time when the local doctor did house calls or would see anyone the same day if they turned up at the surgery. Many patients give up trying with many surgeries adopting the rule that all patients regardless of urgency must call at 8am and when the appointments are all gone, try again the next day. The result of that is, those who may be really weak don’t get appointments whilst the reasonably fit do. Indeed, potentially someone with cancer symptoms doesn’t get seen for weeks whilst they are beaten to the appointments by those wanting a few days off work. It’s totally crazy.

No medical service should rely on luck to get seen. No wonder Emergency departments are always full, all those who cannot get to see their GP!

Then we have hospitals. Originally, most were just a short walk or bus ride away from their hospital, for those who drove there would be parking onsite or nearby and it was free.

Not any more, for many it can take hours on public transport and most car parks charges start at £3+

Anyway, enough generic chatter about the state of the NHS in 2022!

I was struggling prior to getting covid in June this year (22). Covid itself wasn’t really any worse to me than a cold, I have felt much worse for sure. However, once I checked as negative the real problems started.

  • My temperature won’t regulate, I get hold and cold regardless of the outside temperature or my body temperature. It is 20°C in here just now and I am sweating like it’s 30°C.
  • My stomach cramps and I have to ‘go’ quite suddenly and it makes a mess
  • My stamina has taken a nosedive.
  • Eyesight really is very changeable
  • Chest pains

None of those has got a solution from the GP. Some they say ‘long covid’ which is effectively the condition I already had so, just adding some more symptoms.

With my chest pain I am waiting around 3 months for a thorough scan. For the tummy they plan on shoving a camera up my arse but, I got at least 3 months before they give me an appointment and who knows how long that will be?

With stress my energy level drops rapidly. Any sort of stress. It is why I try to impress on others , if I ask you a question, answer me. Being fobbed off raises my stress. I am also finding myself acting as an inbetweener passing messages on for people who could just speak directly to each other. Each time this wastes even more energy I cannot spare.

You must understand, I don’t get energy like ‘normal’ people.

Let me give you an example:

On Monday I can get up at 8.30am and when I wake I feel like it is 2am. I will then push through the day trying to keep going but, my mind is so active with the things I couldn’t physically achieve that I cannot then sleep until I wear out my mind.

My mind is used to life feeling like it is 2am, it never gets better than that and so, it’ll likely be literally 2am (or later) before I get to sleep.

Tuesday I am up at 8.30 but it feels like 2am, yes, I feel the same as I did before I went to bed. I will push through the day but hit a problem I was not expecting at 10am. By 11am it feels to me like it is 5am and I didn’t sleep yesterday either. I push through but, I am not able to concentrate on anything and everything bothers me. Pain, talking, listening, light, sound, everything. I go to bed around 2am

Wednesday I wake up 8.30, it feels like 2am for the first half hour and then I feel that 5am feeling creep in over around 5-10 minutes, it’s very clear to me when it is happening. I barely function on any worthwhile level and concede to a nap at 3pm. I wake at 4.30pm feeling like it’s 3am

This just keeps going on and on, one similar situation after another. I honestly cannot remember what it feels like to be actually properly awake.

Throughout this, I look normal. People life at my failed attempts to talk, some joker may ask if I have had the one too many. Yes, that’s so very funny (not). Others will ask what is bothering me like, if I can find that one thing it’ll all go away. They mean well but don’t actually understand it. many will have known me how I used to be and won’t accept this change, they keep burying their heads in the sand waiting for me to just be ‘me’ again.

What I need is actual physical help. If I look like I am struggling you can betcha I was struggling way before that.

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You have to Laugh

Disability Humour

Whilst no one wants to be disabled or, ‘otherwise abled’, the reality is, some of us are and we’ve choices.

We either feel sorry for ourselves and decide that our life is over, it’ll never be good again and put one foot firmly into the grave or, we take a different approach.

Look, let’s get real, we can to an extent reduce pain, we can take away some of the other symptoms and yes, control some of the many side effects we are going to get from the things we take to get rid of the things we already had! Yes, we can do that but, whatever we can do, to whatever extent it helps, we do have to accept something.

THE LIFE WE HAD IS NO LONGER PART OF OUR FUTURE. 

That’s not a negative viewpoint, it’s the start of acceptance and the realisation of one very important thing.

WE ARE NOW IN A NEW AND DIFFERENT PHASE OF OUR LIFE. 

This is not a worse phase, it’s just ‘different’.

Think of it as more akin to a gender identity change … yeah, I know, not your think (maybe) but, in so many ways, that is where you are. You’ve been this one gender your entire life and then, your appendix surgery goes horribly wrong and here you are, a girl (or boy but not sure how that might happen from a slip of a knife – go with the analogy!).

After you’ve finished the legal stuff, how do you manage to now accept you can’t pee the same way? You can’t, you know, how do people say it? ‘be a real man’?

Well, you just do because Jack’s life is over and Jackie’s is just beginning!

OK, you didn’t get any of that right, too freaked out by the notion of losing your bits?

So, you have this diagnosis, you can walk but you’ll need some support. Your pain levels are really quite high now and it all seems too much.

So, you are determined, you are going to magically be that one person who is going to beat this, you are not going to accept being a failure, you are getting your life back and …

GOOD FOR YOU

But, unrealistic optimism only gets us so far and that so far is generally not as far as it used to be right?

LET’S REMIND OURSELVES OF WHEN WE WERE KIDS

Someone set us a goal, a target we had to aspire to perhaps, jumping a 3ft pole and, we tried real hard, we gave it everything so, someone decided that either we kept failing which was destined not to end well or, they lowered the bar so, here we are, time to:

LOWER THE BAR

Lowering our expectation is not failure, setting them impossibly high is failure, it’s the very definition of failure because it means we have refused to truly accept what can and cannot be done.

IF WE SET OURSELVES UP TO FAIL THEN WE SHALL ALWAYS FAIL

There is only obvious result from doing this, a life of despair.

HEY DUDE, WHERE’S THE DAMN HUMOUR?

Well, there has been some but you missed it reading about gender change, see, you’re still thinking about waking up without your manhood! (Just kidding but, are you?)

Once I accepted that the life I used to have isn’t the template for my life moving forward … hey, that’s a good thing to remember …

IF YOU NO LONGER FIT YOUR LIFE TEMPLATE, CHANGE THE TEMPLATE

Back with you, I went through some grief, yes, I mean, real grief for who I thought I was, all yourself that.

Look, with my condition I do some dumb arsed things.

PINBALL MAN

The amount of times I am walking down a hallway and my balance goes, my legs go wobbly and there I am bouncing from one wall to another all the way down. Hey, it’s funny! Seriously, it might start out a bit scary or even hurt but it’s like those times when you walk down the street heading toward someone in the opposite direction, you both just keep moving the same way to avoid each other changing nothing and end up laughing … you must have done that right? Anyway, it can be really funny at times.

HORSE TEETH

You know what can be really funny? Those times I stumble over my words. I may mean to say:

“Nice weather today”

Yet, what I actually say is:

“Mice webber for hay”

Now, I have done this in meetings, trust me, two choices, laugh about it and explain “I am wearing these teeth in for a horse” or carry on like nothing happened and wonder the whole time if everyone else thinks I am idiot. Hey, they might anyway but, at least I am an idiot with a sense of humour, they could try it some time!

The other day I put two tin cans in the dishwasher and turned it on then turned around to find the cans so I could chuck them only to see the two cups I was meant to put in the dishwasher. Yeah, I could get annoyed about that and get angry that I am a total idiot but … it’s actually really funny, imagine watching someone else do that, you’d giggle right?

By the way, the image actually explains that apparently some people cook food in their dishwashers, who knew?

By the way, I am not going senile, my condition makes me so exhausted I just have trouble thinking at times.

HUMOUR GETS US THROUGH

Accepting our different doesn’t make the unpleasant side go away but, laughing really can make us feel a whole lot better. Just seeing the sunny side …. I left that typo in BTW because I thought it was really comical how I meant to type ‘funny’ but it got down as ‘sunny’ which somehow explains it even better.

Just as we feel better when the sun is out, we feel better when the fun is out too






















INSPIRING

I should imagine each and every one of them said, at some point:

“I can’t do this, I am useless” and yet, look at them.

Each is embracing their ability and not living by their disability,

There are actors now with Downs Syndrome and autism, cerebral Palsy too

There are two above which may surprise you, Morgan Freeman and Lady Gaga both have the same as me, Fibromyalgia which in the UK is barely recognised as a condition at all though in the US it is better understood.

We don’t have to be that ‘out there’ to make our lives good, we just need to be the best us we want to be

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Invisible Illness


Learn Something Today




Whilst I do have an invisible illness this is not just about me. So many people have an illness we can’t see and most of them share the same experiences in their lives. Short lived sympathy, well meant encouragement and disbelief.





This is true for so many … including me




I think we have all done it, we’ve been either sick or healthy ourselves then seen someone who isn’t working, perhaps claiming financial support and we’re like …. yeah right, looks like they’re ill!

No one intends to be mean about it but, we just don’t think. I know I have been guilty of it myself and I should know better and, this is why …





My Mum!




Mum had chronic arthritis. I had many stern comments to say to people on trains who left her standing whilst they sat in the disabled seat but mum was in constant agonising pain every day for the last 20 years or so of her life. I have lived knowing what invisible illness looks like so, yes, I should know better.





One of the things people might say to mum was “Oh yes, tell me about it, I have such pain with my rheumatism, you have no idea”! Now, true, to them it was bad pain but it didn’t compare to mum but she always took it graciously.





The truth is, even two people with the same diagnosis can have hugely different symptoms and degrees of severity. It simply isn’t right or fair from one sufferer to say to another that they do this or that so if they are copied then someone else will cope too, we are not the same.





Because it doesn’t




Why should we expect our lives should ever change whilst we are young and healthy? Mum died at 52, I am fast approaching 56. We just never know what ‘old’ is for us, we don’t know what cards life is going to deal us until we get them.





It is really upsetting to someone bravely suffering to imply that they might be making it up, they might be lazy or expect the state to support them.





“You’re too young to feel like that.”





“It’s all in your head.”





“Everybody gets tired sometimes.”





“Your pain isn’t real.”





“You’re cancelling on me again?”





“I’d like to lay in bed all day too but some of us have to work!”





“Well, you don’t look sick.”





Don’t judge that which you do not understand





The worst part is, sometimes the very people who say it have an invisible illness themselves. They might sufferer terrible migraine, anxiety or depression and, to them those things are totally real. It is no good telling your migraine that it is all in your mind and expecting it to go away!





Let’s get real, if it really is all in the sufferers head, wouldn’t they rather imagine they were wonderfully healthy full of bounce and vigour? Why would someone choose to struggle on a little income if they can choose a good job and big wage packet?





Why do women make this mistake?




Many women each month go through something quite unpleasant and to the outside world, entirely invisible yet, many may well expect and be given time off work for it and extra understanding from those around them simply by saying “It’s my time of the month”. Why can these ladies not understand how hurtful it is to tell someone they’re making it all up?





Next time you are confronted by someone who tells you they have an illness you don’t understand find difficult to accept, give them the benefit of the doubt and believe them. You don’t ever have to fully understand it but, one of the greatest comforts is having those closest to us tell us we are believed.






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Understanding M.E.


It may seem like I go on about M.E. quite a lot. Probably I do.





You see, if I had a broken leg, it would be obvious. Many might understand how debilitating a migraine is, some might also ‘get’ mental health issues … though, that’s pushing it.





M.E. is invisible (mostly). It makes the person who has it look like a lazy good for nothing who is just looking for excuses not to do things, to avoid work. I hear people tell me that ‘we all get tired’. This is true but, with M.E., you don’t get tired, we ‘are’ tired, all of the time. Not just a little sleepy, but that sort of tired that happens at bedtime or, after a huge meal. That sort of tired like jet leg where the brain simply doesn’t function or, when it is, it’s like we are not fully in control and mistakes happen. Forgetting things, misplacing bits and bobs.





Sometimes I just randomly sleep, no idea I am even doing it.





Every day has to be planned, paced. I can keep going if I know what I am doing and know when I am doing nothing. The theory doesn’t always work, with the best plans sometimes it just gets too much. I am functioning but sort of not at the same time.





Many will pass it off as the results of depression or anxiety because they do tend to go along with the condition. Let’s face it, you really want to do something exciting but your body and mind are just hitting the sleep button. That’s going to lead to some emotional issues. Serious anxiety.





I have just started a new job and my anxiety levels are through the roof.





Example using today …. now, tomorrow I have a 3pm – 10pm shift. Today I was up at 07:30am. By 11am I was exhausted, barely able to communicate so crashed out in bed. I remained in bed until gone 4pm! When I ‘woke up’ I felt the same as I did when I went to bed! All afternoon and evening I have struggled to stay awake and been aching loads, every joint hurts, every muscle. Pain relief doesn’t make much of a dent.





With the tiredness comes depression, bad moods and frustration.





I, unlike many, are in my 50’s, this can affect anyone at any age. So, I get the excuse that these things are expected at my age. No they’re not thank you very much for your opinion.





I want and need to work yet, any job I can get I cannot really manage! I lie to myself and tell myself I can work on, get through it but, the reality is, it’s too much for me.





I also have tennis elbow, a result of a bad judgement call I would not normally make but I was on autopilot at the time and not fully in control. This huge pain is expected to last for a few years assuming it ever heals. The other day I couldn’t even put a damn sock on a client because it was too painful … let’s get real, most mornings I struggle to dress myself!





So, I have added a link here. M.E. comes in varying degrees, mine is some sort of middling one, not the most extreme but not the least either. It’s all the same condition though and, keeping going doesn’t actually make it better, it makes it worse if anything. I just keep going because we need the money.





I only just got diagnosed though I have had it a few years, it’s got worse the last year or so.





There is no cure






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