Thursday, 2 March 2017

Ups and downs

So, we've reached March.

I always see it as a pivotal time of the year; I feel that spring's almost upon us as the long, dark days of winter are slowly retreating. The garden's gradually awakening and so are we.

Well, sort of.

I had an appointment with an endocrinologist on Tuesday. It was a Big Deal. I'll tell you why: I've waited for over four years to see someone on the NHS after literally two decades of feeling unwell. Having chased my tail by seeing lots of doctors, undergoing numerous blood tests, paying to see someone privately (I could only afford the one appointment), and desperately trying to figure out what was going on: websites, books, a herbal practitioner... Let's just say I went along well prepared.

The lovely consultant I saw told me I've got Chronic Fatigue Syndrome (CFS). I cried. Not out of fear or despair or anything like that. It was a relief that after so long, I had an answer, and that it isn't normal to feel so exhausted and be plagued by many, many symptoms.

Apparently it takes 3-5 years to feel properly better. But you can feel better.

And, ever the optimist, I'm already working on that. It'll be a combination of diet, physiotherapy, CBT and - most challenging for me - pacing myself and working more balance into my life. I can do it. I will do it. For Joe as much as for myself.

And I'm grateful that I can function pretty well: getting up in the morning, getting Joe off to school, running the house, building this little business of mine. We've had some pretty severe knocks over the past few years (which have no doubt exacerbated the CFS) but the fact is, there are many people who can't do the things they'd like to.

Gratitude is important.

So, without wanting to dwell on that: March. Days of bright sunshine, sleet showers, blackening skies and everything in between, all thrown at us seemingly at once. The house is either sea bed gloomy or bathed in dazzling 'golden hour' light.

Our days seem to follow the same crazy mix of extremes: quiet moments when I can read or get work done sandwiched between the mad morning rush and Joe's return home again, when it's all about the endless questions (still), baking, planting seedlings, making bird feeders, reading school books, requests for dens and jigsaw tournaments.

Of course, this week is a celebration of books and reading. I went into school this morning to read with Joe (it was actually supposed to be for grandparents but he had to make do with me). It's lovely to be in the classroom. We got through three fairy tales and the little ones sang a song about the story they've been reading in class.

After lunch I'm planning a little walk around the village with my camera. Although it's just started lashing down again, so who knows? 

I'm so glad it's Friday tomorrow. Between car problems (too dull to go into, but it's been very annoying), seemingly endless school requests (themed costumes for tomorrow, sponsor forms, drawing competitions, toast money, homework etc), getting to the hospital and back in time for Joe and all the other stuff - well a few days off the treadmill will be most welcome. I'll have my work cut out trying to slow things down. But this time it's not really optional.

I need to find a new way of getting these things done which doesn't compromise my health and wellbeing. I can do it. Somehow.

Finally, my first article (and photo) for Creative Countryside is now in the online journal.

Wishing you a restful weekend once it arrives!


  1. I cried with relief too when I got my ME/CFS diagnosis.
    One thing that's really helped me is to work out priorities ie do I use my energy to drive to the local shop, do the shopping etc or do I shop online and then use my 'going out' energy for something I want to do like knit group.
    If your body is telling you to stop and rest then do so even if on other days you've done the task without resting.
    Don't be afraid to book a mobility scooter or use a wheelchair when out especially if it frees up energy for fun things.
    My wheelchair and I are currently touring New Zealand in a camper van and having an amazing time. It's taken a lot of planning and preparation and I know I will spend several weeks in bed as pay back when I get home, but it will be worth it.

    1. Hi Dawn,
      This is exactly what I meant by saying how lucky I am - CFS has affected me by way of tiredness and lots of illnesses but fortunately (other than tendonitis) my mobility is fine. I just need to make sure I don't overdo things. I'm also very interested in the role Epstein Barr virus has in all this, hence a (hopefully) healing food plan.
      I suspected there may be several readers who would identify with this post!

  2. I'm so glad you have an answer to the way you have been feeling and feel empowered to take steps towards getting better.

  3. Wishing you a restful weekend and good healing journey. It sounds as if getting a proper diagnosis is part of the battle won.

  4. I too have CFS and other autoimmune issues mine started with Glandular Fever that was undiagnosed for months - apparently I had "flu" for 4 months!
    Anyway I have come to realise that all sweeteners that begin with "A" or "K" are absolutely lethal to my system. I don't use sweeteners but it is sadly amazing how many products you would not expect have this stuff in them. I check every single label and I only eat out where I can have things that do not have sauces or anything that alters them.
    Extremely restrictive but the difference between days of screaming pain and days of discomfort.
    You may find that resting does not boost you back up the way it used too, my advice like others is to plan each day with Your priorities and give your energy to that.
    There is absolutely nothing to be gained by pushing through the pain barrier (and much to lose) with CFS. That said it isn't about doing nothing either. Be gentle with your body, try to avoid repeating the same movement over and over. I've found that any exercise (necessary as I'm wheelchair bound now) works best in 3 or 5 but no more and no more than 15 mins on a good day and 5 on a bad one. heat/cold packs (old socks filled with rice heated in microwave or put in freezer) are a huge help as are deep baths with salt in them.
    Hope this helps and good luck.

  5. Let me tell you of the experience of a friend of mine. Healthy and fit and early 40s. Holiday in Ireland and bitten by a tick. Ill with some mysterious debilitating illness, finally diagnosed as possibly wiels disease. Lasting problem was CFS and she finally saw a consultant who prescribed CBT and a fitness programme. She went to the local gym and got hooked up with a personal trainer (not possible for everybody). She then embarked on a programme of exercise EVERY DAY. But the secret behind the success was starting at almost ZERO and very slowly building up, and also, doing it everyday no matter how bad she felt. She had a few relapses where she rested and regained momentum but she persisted and after a year she went back to work and now years on, it is nothing but a memory. With your diagnosis now made you should be able to sigh with relief and start to reclaim your energy. Best wishes Carole.

  6. So happy for you that you now have an answer to how you've been feeling and now can get the support you need to start recovering. Take care of yourself. One of my friends found yoga really helpful for her recovery x

  7. I am so pleased for you to have finally got a name for what has been making you feel so unwell, and to have a path ahead. I am sorry it takes so long, one of my best friends was diagnosed a year or so ago and was told similar. I hope as Spring unfurls it helps lift your spirits.


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