I started puberty early, with breast development at 7 and periods at 11. My periods have always been excruciatingly painful, which I now know is probably a combination of Ehlers-Danlos and Mast Cell Disease, with possible endometriosis thrown in for good measure (I have no intention of having surgery to find out, having lived with the pain now for 35 years). Despite that, my periods have always been regular as clockwork – I could often tell to the hour when they would arrive, usually at 2am for some reason I can’t fathom! Along with the pain came nausea, diarrhoea, menstrual migraines, insomnia and crushing fatigue. As if this wasn’t bad enough, I’ve also always had painful ovulation (the technical name for which is Mittelschmerz). For 3 days mid-cycle I’ve always had awful insomnia, nausea, terrible back pain and cramping, stabbing period-like pain. Being a girl sucks.
When I was very ill with M.E. my periods absolutely floored me and I honestly felt at times like I was dying. I tried the contraceptive Pill which made me suicidally depressed, and shouldn’t have been prescribed in any event as I was bedridden and the risk of thrombosis (ie fatal blood clots) was all too real. And for the past 15 years I haven’t been able to take pain killers either due to anaphylactic mast cell reactions. I’ve also had god-awful reactions to both homeopathy and supplements. I’ve basically had to just get on with it, using numerous hot water bottles, gel migraine strips, sea-bands for nausea and my TENS machine.
I didn’t think it could get any worse. Think again. About 18 months ago, at the age of 45, I entered peri-menopause. There were probably signs before that, but because night sweats, fatigue and dizziness are all included in M.E., and flushing is included in MCAD, I just didn’t twig that the menopause was looming. Until my periods started to go haywire. I went from my usual 28 day cycles, to alternating between 21-24 days and 29-31 days – I personally seem to alternate each month, one month being a short cycle and the next being a long one. The length of my bleeding hasn’t changed, but I can now also spot for up to 5 days after my period has finished.
My “allergy” symptoms have gone through the roof. At times my skin feels like it’s being tickled all over by feathers – it’s really disconcerting, because I could swear something is physically touching my skin yet nothing is there. I itch “down below” and must look very unladylike constantly scratching my crotch! What little sleep I used to get has gone completely awol – I’m not awake due to night sweats, I just simply can’t stay asleep despite being so exhausted I can’t keep my eyes open past 9pm (but then wake every night at 1am and toss and turn until dawn!). My sometimes fragile emotions are now on a permanent knife edge – I feel depressed most of the time and the lid I used to keep on my irritability has been lost in the wash! I feel weepy. A lot. This is new for me as I’m simply not a person who cries much. I feel overwhelmed and unmotivated and just generally crap.
I hadn’t subluxed (ie. partially dislocated) any joints before starting the peri-menopause, and now I’ve had four subluxations in less than 10 months. The week before my period my collagen was always super stretchy due to changes in hormones, but now it seems my collagen is super stretchy all of the time and I’m increasingly worried I’ll start to actually dislocate my really hypermobile joints (eg. spine, shoulders, wrists, fingers, ankles). When my periods were regular I used to make sure I wore all my joint supports and braces in the run up to my menstrual cycle, but now I have no idea when my period will be it’s just impossible to prepare. I can’t bear my joint supports on in any event as my skin is just too painful.
November has been the worst month I’ve had in quite a few years. I’ve spent several days in bed which I haven’t needed to do in a lonnnng time. I feel very MEish: fluey, achy, completely drained and weak, with burning hot muscles and skin. Constant sore throat, awful brain fog, severe nausea, crippling exhaustion. My joints, knees in particular, are killing me – I feel like I have toothache all over my body. As these symptoms have coincided with my starting the H1 anti-histamine Cetirizine I wondered if that was the cause, so I stopped it 3 days ago. I’ve felt worse than ever. But this has also coincided with ovulation, so now I’m wondering if that’s the reason I’m stuck in bed feeling like some dead corpse my dog dug up. I was so nauseous yesterday all I managed to eat was 2 tiny slices of gluten-free toast, plus a cup of warm milk before bed. My heartburn was awful, after being really really good for the past 3 weeks. I barely slept a wink last night.
Today, as yesterday, I am stuck in bed terrified I am starting with an M.E. relapse. My relapses often start like this: symptoms slowly stacking up, with me trying hard to ignore them. Then they get so intrusive I can no longer ignore them and I know a period of being confined to bed is on the horizon. The thing that worries me most is that I never know how long the relapse will last. Days? Weeks? Months? The next 10 years? Forever? Is the peri-menopause to blame? Are the anti-histamines to blame? Is it just the time of year (I’m always, always ill over Christmas)? I just don’t know and the not knowing is scary. I’ll stay off the H1 anti-histamine for the next few days and see what happens. If I don’t improve I’ll go back on it, because since stopping it my heartburn has worsened.
It’s a stunningly beautiful winters day here today: blue skies, foggy sunshine, crisp freezing temperatures. I’d love to be taking my little dog out in the woods, feeling the crinkling leaves under my feet and seeing him bounding around in the bracken. Instead I’ll struggle to go up the road through my village on my mobility scooter, with poor Bertie on his lead tied to my waist, and will come back feeling like I’ve been battered by a hammer.
It’s so tiring managing all these illnesses. I never know what’s causing what and because of that I don’t know how to manage the symptoms effectively. Please don’t tell me to go and get my hormones or my thyroid checked – I had all that done several months ago. And the thought of trying Black Cohosh or DHEA, or progesterone cream or HRT or anything else that helps ‘normal’ people terrifies me – I just couldn’t cope with a mast cell reaction on top of already feeling this ill. However bad it gets I’m just going to have to ride it out. As my periods have always been horrendous, I’ve looked forward to the actual menopause and my periods being over and done with. I only hope I can survive the transition period with my body and mental health intact.