The Boogeyman
- baticamoomin
- Jun 22
- 9 min read
It has been a wee while since I felt motivated enough to do a new blog post. I have had the film theme for this one burbling away at the back of my mind pretty much since my last post, but the problem with chronic conditions that feature fatigue heavily, is it's very difficult to overcome the mental and physical lethargy to summon the magic spoons to allow words to form into intelligible sentences. Especially when you're focused on conserving any meager energy for just getting through each work day.
I was partly inspired/nudged into finally writing this post thanks to some lovely feedback I was entirely not expecting to receive. One of my lovely friends (of which I am very grateful to say that I have a few) who has her own vast experience of chronic conditions, has been a real support and advocate for this blog. It has meant a lot, when I often write from a remove and I have insecurities about how and what I write. I almost can't imagine people actually reading what I write, let alone liking or relating to any of it. That there might be people out there that are actually eager to set their eyeballs on more, is amazing to me.
My friend happened to mention my blog to a work colleague of hers and shared the link. One day the following feedback was shared with me which I would like to share below. Yes, partly out of gratified vanity, but also because it really meant a lot to me. Thank you, Rai and Jasmine!
...I just wanted to let you know I went home and read your friend's blog last night. I thought it was brilliant (loved all the GIFs throughout)...Although I am not in Perimenopause it was powerful to read something and feel seen in having very similar symptoms/experience of Endo. I also read the entry about her losing her cat which almost brought me to tears as I lost my cats last year. I love the raw nature of the entries. I will defo read more, if she decides to post more :)
So, here I am in all my raw and GIF generated glory!
Back on the gynae train - choo! choo!
Last year when I was last under a gynaecologist (hur-hur), after various telephone consultations, internal and external ultrasounds, and a hysteroscopy, I was discharged back to the GP. I was a bit disheartened by this since essentially, nothing changed for me. Still in daily (although for the most part, manageable) pain and no plan to help with that. There was a suggestion of a progesterone supplement which I discussed with my GP who sought some clarification from the gynaecologist. It took a while for a response which was essentially to refer me back.
I'm both keen and reticent about this. Keen because although I feel like I'm back at square one, I want to explore my options. I knew that the ultrasounds and probably the hysteroscopy wouldn't show anything up. My coil has been keeping things settled inside my uterus. The thing is, whenever anything was found, it was via laparoscopy. My first one found the Endometriosis; the second found the congested pelvis and polyps. I'm still in the process of arranging a face to face appointment, which I think is important because other than the hysteroscopy, all my appointments with the gynaecologist have been by telephone. I feel that I need a face to face appointment to really feel like I can communicate my side of things properly. It's really difficult to try to distill nearly a decade or longer of history, procedures and symptoms via a short telephone call.
My husband has offered to attend with me for which I am very grateful. I'm hoping it will help me to be a bit more assertive knowing that I have someone to help advocate for me. The gynaecologist mentioned in our last call about wanting to address my coil, which I assume means discontinuing with it. I understand that, as I'm approaching mid-forties so I know continued use can be dangerous, but I'm also worried because I'm pretty sure that is what has kept my symptoms from being much worse. Before the coil, I had tried the mini-pill and it didn't work for me so I'm reluctant to go back to it if that is what is on the table.
What I really want to discuss, and I have raised this before, is a hysterectomy. I'm in my forties, perimenopausal, and have never wanted children. I wouldn't miss having a uterus and I'm already taking HRT. Even if there is only a slim chance that it would lead to only a slight improvement in my conditions, I'm willing to take it. I already know that hysterectomy doesn't necessarily stop Endometriosis, but to my mind, it can't hurt to try. Or at least seriously discuss it. It would at least shed some more light potentially on what is going on in there, and if it doesn't, I still have ME/CFS to explore which I still feel clicks a lot with many of my symptoms.
The reticence comes in because the whole process of trying to make myself understood and heard is just exhausting. I feel like I have been back to square one so many times. I've been on this rickety rollercoaster for such a long time. I remember the gynaecologist who performed my laparoscopies telling me during my very first consultation with her (I think she is semi-retired now and unfortunately, I couldn't get an appointment with her as she's now only seeing patients she has treated within the last three years) that she thought I had probably been suffering with my symptoms longer than even I had thought. I was thinking about that remark very recently and I suddenly remembered various GP appointments in my teens regarding unexplained abdominal pains. There never was a resolution and soon after I was taking the pill for contraceptive reasons and it's made me think that perhaps taking that helped to stave off and mask my later chronic pain.
Patchwork booty
During my conversation with my GP regarding the referral back to the gynaecologist, my HRT prescription was due for renewal. At the time, I had been on Evorel 75 patches since 2018. I remember way back when, I had occasionally suffered with cystic acne along my jaw and neck. It was never massive crops or anything, just the odd one or two every so often, but whenever I got them they were painful. Consulting Dr. Google suggested the cause of cystic acne was hormonal so I was pleasantly surprised that it cleared up within days of starting the patches.
Over the last few months I had noticed the cystic acne making an insidious reappearance, along with the increased frequency of hot flushes and night sweats. The GP suggested trying me on six months of Evorel 100 which made sense to me since I had been on 75 for so many years, there was a good chance in my mind that I needed an increased dosage.
Again, within days of sticking the new, larger patch to my not inconsiderable-sized booty the cystic acne cleared up. I still get hot flushes and night sweats but I definitely noticed a decrease in severity and frequency. It was reassuring that the choice to "upgrade" was vindicated.
Coping in a heatwave, or not
Anyone in the UK will not have failed to miss that we have been experiencing a heatwave the last few days. I was never a summer person even in my best days. Very much an autumn/winter person. Anything above 20° is considered extreme heat in my fucked up book.
Being distinctly averse to heat anyway, adding Perimenopause and tricyclic medication into the mix, is a recipe for extreme wilting. I take Amitriptyline. It falls in the category of antidepressants but is now more commonly prescribed for nerve pain. I was initially prescribed it for my knicker torturing Vestibulitis but it also sometimes helps with my sleep. Anyway, tricyclic antidepressants can also make people more sensitive to heat as they interfere with the ability to regulate temperature. Yay.
I absolutely detest feeling overheated and sweaty. It makes me feel incredibly self-conscious due to the absolute swamp that my hair, forehead and neck feel in particular. Imagine having to take so much time to put on makeup, taking regular fan breaks to try to not encourage a breach of the swamp monster, managing to get to a point where you're feeling happy with how you look, and within minutes you just become a melted, sweaty, red-faced mess. It's not great for the self-esteem. Especially because I hate how I look when I tie my hair up.
How do I "cope"? Well, I've tried a few things. I've tried a few anti-sweat face creams with neglible results. I have a handheld fan which is very dear to me and I don't go anywhere without it in my bag. A water bottle regularly topped up with ice. When it's really bad (I've suffered with heat exhaustion before which in turn brought on a flare-up of my other stuff), an ice pack to the neck has been effective at providing relief and getting my body temperature out of the danger zone of nausea, dizziness, and breathlessness. I have a very good big fan that I wouldn't be able to get through the night without, even on a regular day because of night sweats. I also have a neck fan which isn't hugely powerful but used in conjunction with the other things, definitely doesn't hurt.
Medical misogyny
I talked a bit about this in my previous blog post, and recommended a couple of rage-making but brilliant books. Since then, my aforementioned friend, Rai kindly gifted me a copy of Naga Munchetty's book, It's Probably Nothing. Yes, it will make you justifiably angry by the systemic problems of women being dismissed, patronised and unheard, but she also provides a lot of encouragement for self-advocacy and includes searing real-life accounts of experiences of women's battles to receive diagnoses and help. There are useful contributions from doctors and specialists who recognise the problems in the system, are trying to effect change, and shine a light on the work that needs to be done.
Tired and wired
A little while ago, another chronic illness sufferer shared some really useful research that really resonated with me. It was in relation to a different chronic pain condition but my layman's brain has assumed that the principle is the same. Being in constant pain leads to the production of excess adrenaline. Which leads to excess stimulation. Which leads to insomnia and feelings of anxiety. Which leads to the Dark Side.
It went on to say that when eventually falling asleep, the body continues to get busy like a crazy overworked chef to make extra adrenaline overnight. What really struck me was the bit where it mentioned waking up feeling unrefreshed and having dream-filled sleep. I've often commented to my husband about the many and vivid dreams I've had, and waking up feeling unrefreshed and feeling like the floor of a taxi cab (👻). The extra kicker, is that of course it's a vicious cycle. Adrenaline fuckery feeds off pain like The Knot in Doctor Sleep, making sleep even more difficult.
I know that perimenopause/menopause causes feelings of anxiety, but I was also interested to read in this research that excess adrenaline can be created by the body overreacting to stresses, like pain, which causes feelings of anxiety. I've often remarked to my husband about feeling anxious but being unable to explain why. Perhaps it is this.
No wonder I so frequently feel the toxic combination of being tired and wired.
Adjusting to absence
It's still horrible without Aragorn. Of course, I miss him always, but sometimes I feel like I have been adjusting to his absence. I probably have by degrees, but then there will be moments seemingly out of nowhere where I feel so sharply the wrongness of him not being here afresh. It's like my heart and/or brain suddenly resets and I'm back to not being able to believe that he isn't here anymore.
There are other times where I'm just stuck.
A couple of months ago, I finally bought a replacement scratching post pole for Hardy. The previous one was totally shredded and I had to draw the line when I kept finding bits of it throughout the house like straw. I think I had been putting it off and putting it off because it was the last one that Aragorn had used. I know it doesn't make logical sense, but the thought of getting rid of it felt like I was somehow throwing him away.
It wasn't fair on Hardy though who does love to have a good scratch and it was the impetus to finally get a new one. When I was going to place the order, I realised that I didn't need to order one as tall as the previous one. Aragorn always used to stretch up quite high which necessitated the need for a taller pole. Hardy doesn't stretch up that high so I got one that was 10cm shorter. It gave me pause because it felt like losing a bit more of Aragorn.
Out of that moment of sadness however, came tenderness. When the new scratching post was in situ, I scratched my fingers down it. Hardy always comes running at the encouragement to have a scratch, and indeed that was still the case this time. I gave him lots of praise and fuss and he looked very happy to have a good scratch and get lots of attention from me. It made it all worth it.
I think that this is just the way it is going to be, particularly when we're still in the first year of him not being here.
That concludes the current state of things. I will hopefully have more news after I have actually seen the gynaecologist. I think I am due a call on Tuesday to arrange the appointment. I'm sure that will then cue the anxiety demon which always likes to shed enough light on the fear of the unknown.
Until next time...
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