You’ve got to be kidding M.E.?

After the drama of my C-Section and back surgery I was craving normality and control and I got it for a wee while you know. I continued to grow stronger through the months of 2016 and I was excited – really excited to start living a bit more. Eli was changing so quickly; he’d progressed from a baby to a wee person and I was loving watching him grow up and learn. I could tell he was going to be a handful right enough, it was like looking at a tinier angrier version of me, we were slowly beginning to wean him off his reflux meds and I was really sure it would make the difference to him.

I can’t really say WHEN it started but I remember cooking Christmas dinner (for 8 don’t you know… yes only a few months after surgery) and feeling more tired than I’d ever felt before. I presumed I was coming down with something and sure enough, on the 29th of December 2016 I came down with what I thought was a flu. I had friends staying for New Year so I pushed through it but I knew, when I was no better on the 3rd of January I needed to see the doc. My mouth was full of ulcers, my glands were up and I felt like someone had poured concrete through my entire body… a virus right? The doc was fairly confident it was but wanted to give me some antibiotics just to be sure. So I tottered off fully expecting to feel better v soon….

Only I didn’t and actually, I never have again.

I was back at the docs regularly, weekly in fact, because I was getting worse rather than better. Over the course of 3 weeks I began to lose my short term memory, forget words, fall asleep sporadically throughout the day and most distressing was that I was finding it hard to be mobile. It genuinely felt like my body was shutting down – I had no energy for anything. I was slurring my words at work, I was forgetting what I was supposed to be doing and I was pretty incapable of doing basic tasks like climbing the stairs without needing to lie down after. In short I was fucked.

I spent a lot of time with my doc again, she presumed I was recovering from my virus, she obviously knew my body had taken a battering the previous year and she was hopeful it was just a hang over from the surgeries. March rolled into April and I went back in to see her, this time I took Christiaan, I was pretty incapable of explaining what was going on any more… I was quite literally a zombie and yet again he was picking up the slack of looking after Eli. Enough was enough.

We discussed looking at my symptoms a bit more, I’d already had blood tests which ruled out the most sinister but again I would be at the mercy of the NHS’s waiting lists. I couldn’t, I was 36 with a young baby, a husband and pretty intense professional role…. I went cap in hand to my private health care again, in the hope that we could just get whatever it was fixed. I was signed off work and told that I needed immediate rest; not the kind of Sarah rest I’m used to, but the kind that means I do nothing. I rest my brain, I rest my body. I’m shit at that. I need mental activity and stimulation to thrive – its part of the reason I’m writing this blog to be honest but I did as I was told. I rested and I went to see that private consultant in as good a rested state as I could have…. but it had made no difference, I was utterly utterly fucked and it was frightening me.

Seeing that consultant was a blessing and a curse. A blessing because I got to diagnosis far quicker than many others with my condition but fuck me, when you REALLY look at your body up close with scans, examinations, tests… you find a list of things that aren’t quite right. The following months of 2017 were the scariest I’ve ever had and I hope are the scariest I’m likely to have in this lifetime. I was so tired, so unable to think, or do, and I was falling asleep for hours on end after really basic tasks like having a shower.

I had in excess of 20 blood tests looking for a whole host of potential causes to my physical state, all came back clear, or normal and we were running out of options, I could tell. My consultant wanted to send me for a brain scan, he said that some of the neurological indicators weren’t quite as he’d expect – I wasn’t able to walk in a straight line, or touch my nose with my finger, both over rated skills in my opinion anyway but he seemed quite keen to understand why. I genuinely expected that it was another routine test, that the would would find nothing and I’d be back to square one. Sadly, I was wrong.

Pretty soon after my scan I was called back to see the consultant who looked a bit nervous, explained that there were a few things on the scan that he wasn’t equipped to deal with and that I’d be seeing a neurosurgeon. I wasn’t to worry, but the scan showed potential indicators of MS.

M FUCKING S! AND I WASN’T TO WORRY! Fuck me backwards and call me Henry…. I was shitting myself. There was a 3 week wait to see the neuro surgeon and in the meantime I was to go in for an all over MRI scan so they could look for further indicators on my spinal chord. Christiaan and I were in a weird limbo, we had no idea what any of this meant for our future but we were trying really hard to put a brave face on for everyone else…. standard. It was killing us though, the worry, the stress – everything.

I had the scan, I waited, and I licked my wounds. I left my support network – an amazing group of women I’ve spoken to on Facebook during my pregnancy and since Eli was born (fondly known as “the girls” – I’ll tell you more about them another time) because I was so angry. Angry at everyone else getting on with life and actually living and enjoying their family. I felt the weight of every lost experience, every missed opportunity and every ounce of normality like a blow round to the chops. I was so worn out I could, and did cry, frequently. I’ve never come close to being low like that either previously or since and those that know me, know I’m not a crier.

We walked into that appointment with a huge amount of anxiety but on the whole the news was positive. The Neuro surgeon was happy that we WEREN’T dealing with MS – YA DANCER!!!! However, (and yes I know I shouldn’t start a sentence with however, but it’s my blog so…. suck it up) there were 2 anomalies on my scan. One he was fairly sure was a cavernoma, which is basically a clump of brain vessels stuck together, a bit like a raspberry and the other was likely to be a benign tumor or lesion.. but only time would tell. Now, the cavernoma is hitting my pineal gland (I know, I know, I’m getting technical) so his parting shot to me was “if you find that you can’t look up, get yourself to hospital quickly”….. what the fuck?! I tested my ability to look up a billion times a day in the first wee while just to make sure… my brain really is a dodgy bastard. The lesion/tumor would need a bit of hand holding and he wanted to see me again in 6 months time to make sure it hadn’t grown or jumped around or summit. I’d need another brain scan.

Oh and, neither the cavernoma nor the lesion/tumor were causing my symptoms – it was impossible.

WAIT A FUCKING MINUTE

what?

True story. These brain nuggets, along with kidney stones, scar tissue in my urethra and enlarged throat glands were all just incidental findings of the many many different scans, tests and examinations I’d had. I was no further forward in finding out what was wrong.

fucks sake

I was referred to a Neurologist. Hold on, we’ve already been through this haven’t we? No, it turns out the neuro surgeon is only interested in the physical mechanics of the brain, the neurologist is the man to see when the mechanics look ok but are not playing ball. He was a right nice fella – he spoke nice and slowly so I could understand. He said I have a recognised condition, they know it exists, but they don’t know why- it’s been around since the Victorian era they think. It’s a bunch of neurological conditions working together to make life difficult. Do you know, through all of this, I didn’t think to ask what the fuck it was called and he never ever said. He did say he was sure I’d begin to see a difference within a year. A fucking year… I could do that!

I’d gone back to work in April because I needed to do something normal, and… well I was going to get better wasn’t I so I needed to get a bastard move on really. I wasn’t performing as well as I had been prior to being ill but I had learned that if I rested during the day, made sure I was in bed for 9 and accepted that I could do nothing after I finished work at 3.30 I could just about keep the wheels turning. Weekends just became rest days where I would sit in a zombie state unable to converse or pick my nose… poor Christiaan. Or lucky Christiaan? I mean I was an utter pain in the arse in normal form.

I was still back and forward to the docs locally, I knew there had to be SOMETHING I was missing and although I was getting by, I really wasn’t living. We couldn’t go out as a family like other people because I needed to sleep and rest so much and work just ripped every bit of energy from me during the three days I worked…. and I really wasn’t getting any better. Three months passed and I was just as bad, I was coping with the symptoms better, but they were still there.

Finally in September my local doc explained that we were now at the stage where, if I was going to get better I would have. She said we were dealing with M.E.

Do you know, it was the strangest feeling – having a label for this big barrel of shit. It gave me a sense of freedom, I knew I wasn’t nuts, or lazy but it also tied a great big anchor round my neck. There was, and continues to be no cure. There are coping mechanisms that may work for some and not others. There was one specialist in Scotland and she thought I should see him… He’s so busy that it’s now the end of March 2018 and there is still no sign of an appointment.

So I’m now 1 year and almost four months into this journey and the stats say that with the symptoms I have and the length of time I’ve had them, I’m unlikely to make a full recovery. Mind you, the stats also say that only 1 in 10 stay in employment with M.E. and I’m that 1 so… watch this space.

I’m still exhausted. Most days are a struggle but Christiaan and I have kind of found our groove a bit more. We don’t go out at night, not because of vampires, but because I genuinely struggle to talk past 8 o’clock and I’m normally always in bed for 9 (tonight it’s 9.54pm and I’m applauding myself!). I work 3 days a week at a fast pace and some days I don’t make it in and sleep all day. My boss is great and understands that some days I can’t talk, I work from home 100% of the time. Eli and I don’t go very far on my two days off, I’m genuinely not able to walk or run or do any of the daft stuff we should be able to do. If I push myself, I’m bed bound until I recover… which is no fun. So we live a very quiet and boring life… but we laugh… a lot.

My body is incredibly tired and not content with fucking around with my neurological pathways has now started throwing some physical symptoms my way too. So far, the crazy bastard has decided that swelling is fun, bruising is fun and also I should have sores on my neck. My face, legs and hands swell regularly when I’m tired now, but that crazy bruised finger… that’s a one off! I have no idea what happened, it wasn’t sore and it was there fore ages… the doc was flummoxed when I showed her. The neck sores come and go, I have steroids for that to use when it flares and apparently its symptomatic of exhaustion. Work has been crazy busy and I’ve needed to mentally push myself, and this is my bodys way of revolting according to the doc… I need to slow down. Fuck that. I refuse. If I slow down any more I’ll stop! Life is for living and if this bastard won’t fuck off then it needs to accept its along for the ride…. the very slow, not going anywhere ride. Sigh.

What a cock.

To add to the fun times I also now have pretty severe bone pain. Again this comes and goes with exertion but can be controlled at least by painkillers. There are some days though that I’m so sore I could cry – if this is what you call yuppy flu… you can keep it. I’d not wish it on my worst enemy. Please believe me when I say you do no not understand tired unless you’re here, and here is a shit place to be, I never want to see you here.

In among all of the horseshit is my wee boy and my husband though and they both keep my smiling and glowing. I adore them and I never ever forget how lucky I am to have them both around me – others with more severe versions of M.E. never get to experience half the things I do. Someone is always worse off. Always.

The next time you hear of someone with M.E. I want you to stop and really consider what this means for their life. It doesn’t mean they’re lazy, or a lay about – well not always, some are to be fair – there are people all around you, rubbing shoulders with you in the super market who are struggling to put one foot in front of the other some days.

Please be kind, please be tolerant, please think.

Lets end on a wee ray of sunshine… mine.

2018-02-19 11.17.58

15 thoughts on “You’ve got to be kidding M.E.?

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