ME/CFS Health Update – June 2013

24 Jun
How is Mr Happy today? Photo by Jess B.

How is Mr Happy today? Photo by Jess B.

A couple of months ago fellow blogger Jackie over at Lethargic Smiles posted her Spring 2013 health update. She asked herself a number of questions and answered each in turn. This structure gave a complete and comprehensive overview of how she was doing at that time. Jackie suffers from a chronic illness too and her blog is great, really uplifting despite her less than ideal health situation. I highly recommend reading it if you don’t already.

I see my ME/CFS consultant neurologist once every three months. Before each of these appointments I always make some notes about how me and my ME/CFS have been doing since my previous consultation. But I never had a structure to it. It was more a brain storm, scatter-gram approach. I’m seeing my consultant this week and as I thought Jackie’s approach was a really well thought out health review, I’ve decided to follow her lead, and ‘pinch’ some of her questions!

Question 1: How are you feeling?

  • Today, not too bad. Better than the last couple of months but not as good as when I saw my consultant last (March 2013).
  • Things have been a bit up and down. I caught a horrible flu / cold virus in April and it totally wiped me out. I spent the best part of a week in bed or on the sofa with an awful cold, cough, sore throat, terrible myalgia aches and pain, temperature plus my fatigue rocketed and energy levels plummeted.
  • I’d say it took me about two weeks to get rid of the cold & other viral symptoms. But my myalgia levels and fatigue levels were much worse than before the virus. It’s taken me the best part of the last 2 months to pick myself up form the effects of the horrid virus.
  • During that time, my energy and fatigue levels have been much less ‘stable’ and as a result lots of other symptoms have crept in again (things that back in March were much reduced) – see questions 2 and 3.
  • Finally now, mid June, I’m beginning to have more good days than bad I think. Stamina and energy is picking up again, as is my positivity and mood.

Question 2: What symptoms are most persistent right now?

  • IBS gastro symptoms, especially bloating and constipation, are really bothering me at the moment. Been worse than my ‘normal’ for 6 months or so now and especially bad since I saw my consultant last (March 2013). (See my recent posts for the gory details!)
  • Headaches – I’ve had a lot of headaches in the last month. One week I had a headache that demanded I take extra painkillers everyday, and after 6 days it turned into a full blown migraine. I couldn’t tolerate light or sound. I had to just go to bed with the curtains closed and a cool flannel over my eyes. Nothing else helped. Last week, for several days, I had a pressure headache at the back of my head where I felt like something was trying to crush my skull. It was horrible.
  • Muscle twitching is back and has been since the horrible bad cold/flu virus I had back in April.
  • Dizzyness on standing, especially from a lying down position when I’m resting, when getting up in the morning and sometimes when doing yoga.
  • Getting more myalgia aches and pain in my neck and upper body but think this is because I’m managing to do more thanks to my energy seeming to be a bit better (question for my consultant).
  • Sensitivity to sound, multiple conversations, background noise is worse.

Question 3: What symptoms are least persistent right now?

  • Generally fatigue is slightly better, in the last few weeks at least. Tho last few days I have been really tired, mum said I looked exhausted, assume it’s as a result of doing too much on Saturday (went to local market town for a couple of hours with my mum and dad and then my cousin and uncle made a surprise visit in the afternoon –  lovely to see them but surprise visits not so good for my pacing).
  • Night sweats – not had them for the last month or so – hurrah 🙂
  • Mood is much better. I had a couple of really down weeks recently where I was emotional all the time, couldn’t seem to find my positivity and generally was very fed up. But somehow I managed to pull myself out of that black hole, thankfully.
  • Cognitive function seems a bit better again (it was worse during April and May), feel less cloudy, more able to focus and write/read for longer.

Question 4: Have you added any medications, supplements, treatments or “food” medicines?

  • D-Ribose – love love love this stuff! I dissolve 1 tsp of D-Ribose in 500ml of cold water, 3 times per day, and drink it throughout the day. It has been amazing at keeping my energy levels more consistent and preventing crashes.
  • I’ve started using a wheelchair when out sometimes, it has helped me last longer and enabled me to do more.
  • I have been trying to resolve my gastro issues through diet – have tried the FODMAP approach and now trying high soluble fibre approach. I am taking a soluble fibre supplement, which does, touch wood, seem to be helping (ie. keeping things moving!)

Question 5: Have you subtracted any medications, supplements, treatments or “food” medicines

  • I had to stop taking the Emergen-C 1000mg vitamin C supplement to comply with the FODMAP elimination diet. I haven’t yet reintroduced it.
  • Stopped using Linseed as a natural laxative to comply with FODMAPs and the fibre approach.
  • Haven’t had my monthly B12 injection this month as my GP told me my B12 levels were off the chart in the latest batch of blood tests. I’ll see how I go symptom wise in the next few months and may re-introduce it.

Question 6: What have you been able to do since the last time we talked?

  • Drive to and from a meal out with Mr B at a local pub (okay it’s only like 5 miles away but still, before Mr B would always drive or I’d just drive there and not home again).
  • Go out for dinner with Mr B (not just lunch)
  • Make a plan to move back to living with Mr B in our flat in London
  • Cook a simple one pot dish for dinner
  • Write and blog for longer periods of time in one go without feeling fatigue spike (though myalgia does creep in).

Question 7: What have you tried doing but had trouble with?

  • IBS symptoms – I’m trying to get to the bottom of what makes me bloat so much. This is a process of trial and error and is ongoing.
  • Pacing – I need to be stricter and stick to the limits and not exceed my boundaries on good days. Am being a bit boom and bust again.

Question 8: What do you think you need to work on?

  • Being more consistent with my use of the NLP technqiues.
  • Be stricter with pacing. Stop an activity when my body tells me to i.e. work on listening to my body more.
  • Worrying less (about what others in my life are thinking/stressing about and worry less that I’m failing at pacing myself).

Question 9: What are the 3 best things in your life right now?

  • Mr B – we’ve had several really good ‘talks’ recently where he’s said stuff that I needed to hear (about our future, my recovery, his amazing support, our joint wants, goals and desires) and that has had such a reassuring effect on me. It’s made me see there is light at the end of the tunnel and so many reasons to keep positive and believe that I can and will get better.
  • My sister Lou is home from the USA in just over a week. Am so excited to see her 🙂 She’s managed to work her summer teaching schedule so she can be here for 6 weeks. (I’m not thinking about when she goes back mid August and won’t then be home til Christmas, just focusing on her coming home fore now :-))
  • 5 weeks today Mr B and I will join my mum, dad and Lou in France for two weeks of lazing by the pool in the sunshine, yummy BBQs, French wine (not so much for me…) and general quality and relaxation time altogether.
  • And a 4th – I can eat bananas again!!! See my previous post for more info on that!

So there we have it, a whirlwind review of how I’m doing health wise with ME/CFS at the moment. My specialist will be so impressed that I actually have a coherent answer to his question ‘So, how are you doing?’!

Watch this space for a follow up post after I’ve seen my consultant when I will share his pearls of wisdom (lets hope he has some!)

Bye for now,



6 Responses to “ME/CFS Health Update – June 2013”

  1. triciaruth June 24, 2013 at 11:25 am #

    Good luck with the pacing… I found (and still find) that doing less on a good day can often be harder than keeping up activity levels on a bad day. I had spent so long feeling trapped in my own body that when the fog lifts you want to run and jump and sing fo joy (relatively speaking).

    I had somewhat of an epiphany on pacing the other day, when I was building some shelves from Ikea. There was no way I could lift the box that they came in but, when opened up, each individual piece was ridiculously light and easy to lift and carry into the house and then up the stairs later on.

    Try to plan more with your pacing… take a task you want to get done in the day/week and break it down into chunks that you know your body can cope with in one go (i.e. get shelves out of car and into house – break – take shelves up stairs – break – put shelves together – end. It may take longer than a ‘normal’ person would take – it may take you a couple of days rather than a few hours – but you will be able to get it done.

    Sorry if that is telling you what you already know. Hope the consultant appointment goes well too.

    • myjourneythrume June 24, 2013 at 5:53 pm #

      Thank you so much for your comment. I totally agree that restraining myself on better energy days is harder than making myself do enough on bad days. I’m definitely an over-doer. I don’t think I’ll ever stop needing to be reminded about taking pacing slowly so thank you so much for taking time to tell me about your experience. What you say is so right, I must plan activity more and break things into chunks more. Thank you ever so much for the much needed reminder 🙂

  2. Jackie June 25, 2013 at 4:53 pm #

    I’m happy you had an improvement to report with the fatigue! That is so exciting about getting to see your sister. I recently moved to the same town as my sister and love being able to see her all of the time. Sisters are such important people. Thank you for the shout out and I’m happy my post inspired you to do a comprehensive review for all your loved ones and readers. 🙂

    • myjourneythrume June 25, 2013 at 8:23 pm #

      I’m so excited about seeing my sister! You’re so right, they are very special. I’m glad you live close to yours now.


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