Weekly roundup

I logged on to my blog this morning to write this post and had a wonderful surprise.  Dr Theo Theoharides, leading mast cell researcher whose work inspired my popular Canary post, had left me a comment.  Little old me, lying here in my bed in the wilds of nowhere thousands of miles across the pond.  Isn’t the internet amazing?!

I’ve had a fairly relaxing week.  I desperately needed it.  I was on my knees with exhaustion and have found all the hospital stuff of the past month stressful.

As you know, the gynae consultant has recommended I try the Mirena coil for my endo/adeno pain.  Having researched it, in particular reading this article on the HMSA website written by Professor Howard Bird and the Net Mums forum where there is an entire thread about horrendous side effects from Mirena (including it moving and perforating the uterus, a consideration when you have very thin skin which tears easily to start with), I’ve decided not to take the progesterone impregnated coil option.  Nearly all my sprains, strains, tears and subluxations occur in the latter half of my menstrual cycle when my hypermobility worsens – the whole thing obviously being progesterone driven.  I’m also ridiculously clumsy during the latter half of my cycle and spend my days ricocheting off doors and dropping stuff.   I did explain at my last gynae appointment that I’d tried progesterone only pills in the past and after only 3 weeks was so depressed I literally couldn’t get out of bed but my experience was totally ignored.  The trouble with my decision is, by not even trying Mirena the Consultant will think I’m being awkward.  She’ll think I should at least try it and have it removed if there are any side effects.  What Doctors never grasp is that the side effects often don’t disappear – for some bizarre reason once something in my body goes wrong it seems to get stuck there and for me it’s just not worth the risk.

I’m also fairly sure I’m not going down the surgery route either.  Much as I’d give my left arm for a hysterectomy, the impact on my M.E., the risks of prolapse and other complications due to my EDS, not to mention the risk to my life from the drugs and my MCAD just aren’t worth it.  So I’m just going to grit my teeth for the next 5 years and hope it settles after Menopause, although that won’t help any existing adhesions which tug and sting and burn every second of my life.  Being a girl is shit.

All the driving of the past month has had a horrible effect on my back/hips/legs.  I’ve developed a burning nerve pain down the front of both thighs, which I’m assuming is some of kind of inflammation/irritation of my femoral nerve.  Despite the pain, however, the whole of the front of my right thigh in particular is totally numb to the touch.  The femoral nerve starts in the lower back then passes through the pelvic ligaments before travelling on down each leg.  So it could be a problem with my back, or my pelvis, or my ligaments or all of the aforementioned.  I’m just hoping that with rest it will settle down.

After 3 months of not wearing my custom made insoles, the awful pain in my feet and SI joint has settled though the pain in my rotated knees and hips has worsened.  The words rock and hard place spring to mind!  I received my newly modified custom insoles back this week but after only 2 hours of wear the pain in my feet was back and my left knee was so sore I was hobbling.  FFS.  I’m just going to give up on the whole insole situation and just wear the ones I bought off Amazon – they’re not ideal but they seem the best out of a bad job.  Not wearing any insoles isn’t an option as I’m crippled without arch support – mind you, I’m often bloody crippled with arch support!

My parents have sponsored a child in the Senegal for 12 years now through World Vision.  The monthly sponsorship money is pooled to provide large scale initiates like vaccinations and education for Dani’s village, but we’ve also been able to write directly to Dani and send her Christmas and birthday presents.  We know she’s received them as she writes back, using a child sponsor interpreter, which has been wonderful.  Dani lives in a mud hut with her parents and 7 siblings.  They have no electricity, sanitation or running water.  Can you imagine the heat and humidity of Africa with no way of ever being cool or keeping food fresh?  Can you imagine the flies with no underground sewerage system?  As a young child, Dani faced a 3 mile walk to school and back every day.  When people talk about poverty in the UK they really have no idea what they’re talking about.  Anyway, I digress.  Dani is now 18 and an adult, so my parents have decided they’d like to sponsor a small child again and give them the chance of the health-care and education that Dani has enjoyed.  They heard this week they are to sponsor a 2 year old little girl in Bolivia called Maria and I wanted to share her picture with you all.  OMG how cute is this face?

Gosh, it’s already 9.30am and I’m not even dressed yet.  I’m normally up, breakfasted and out with Bertie by now on a Sunday morning.  He’ll be platting his little furry legs if I don’t get a shift on!

 

 

5 thoughts on “Weekly roundup

  1. TC

    I can tune into the whole menstrual hell. I had bad periods from my very first one. Periods got worse over the years. I had a twisted ovarian cyst removed at 24. Menstruation continued to debilitate. Endo diagnosed, lots of adhesions. Then after trials of hormones etc. 3 monthly visits to gynae etc I finally at a hysterectomy at 38. I was period free! I still have adhesions. I still get cyclic breast pain. Glad I did it though.

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      1. TC

        Thanks, Jak. I had only been diagosed with ME back then and have since been diagnosed with EDS, POTS and related conditions. I would have been wary of having the surgery if it had been a decision that I had to make now. I survived 6 ops post ME dx,, and the last one was the worst as the MCAD, POTS and neuropathy really kicked off after that although I had some signs coming on for a year beforehand.

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  2. Glo

    I understand your frustration. Doctors and most people don’t get it. I’ve many times just given up because I just can’t make the doctors understand. My daughter who has fibromyalgia and probably MCAD is the same way. We just learn to live with it which really sucks. Wish they would require courses in compassion for medical staff. I know they can suffer from compassion fatigue and need to protect themselves from this. Maybe as compassion fatigue becomes better understood and ways are found to combat it we will have people who care again in this field.

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