The Rainbow in the Storm- Checking in with CFS/ME

Rainbow quoteLying on the sofa in PJ’s for the third day in a row might seem like a luxury to non sufferers and it used to be for me as well before I got ill. However my PJ’s and a cheeky hot chocy were accompanied by searing  pain, tingling in my arms and legs or at times the inability to even concentrate on the most mind numbing TV.

So my current stint on the sofa hasn’t been all that luxurious, the forecast has been filled with severe weather warning of: impenetrable brain fog, with pain showers throughout ranging from an annoying dull continuous drizzle to a full out thunder storm that brought a tear to my eye.

But though all the fog, the drizzle and the storm there has been a rainbow; evidence of the rays of my progress with this condition trying to burst through. Whilst these rays are not strong enough to banish the fog and the storms, the rainbow to me symbolises hope and makes me feel content and one might even go so far as saying happy with my situation.

Back to real life

Ok enough of the theatrics and metaphors these past few days have been rubbish and this flare up is not fun in the slightest, however we need to take a step back, last week I had a case of mild tonsillitis/ a severer cold but did I stay in bed and rest all week?

The answer to that question is NO, although that might have been the sensible idea.

On Friday night my prince charming and I held a Harry Potter themed Halloween party, something we had been planning for a while, and may or may not have gone a bit over board with, in my mind I have started to see difference in my recovery and I haven’t had a birthday party for at least 2 years so in my mind this was making up for lost time.

So instead of resting up like a good little CFS/ME sufferer, I ploughed through it but instead of just plunging head first, I took care of myself I planned lots of short rest, filled myself full of cold and flu tablets, sniffed olbas,  pretty much continuously gargled TCP and kept checking my tonsils to see if I needed anti biotics (Luckily I didn’t).

So with the party in mind on the Friday, we had a lot of preparation to transform our little house into the wonderful world of Harry Potter. Basically lots of arts and crafts throughout the week, as well as balancing going to work for my allotted hours (Link) however I did take Friday off as holiday so I could rest, bake and pull everything together.
Harry Potter Party Ideas
The party was an absolute hit, about 15 of our nearest and dearest friends all came together all dressed up as HP charters all sat around and chatted and drank played a few games, don’t get me wrong it wasn’t a crazy house party like back when I was at uni and like of the snap chats I was getting from my lil sis but for me it was perfect, I got to sit most of the evening and chat to friends I hadn’t seen for a while and those who I see/talk to all the time, it was perfect I even managed to stay up until 2.00am when the last person left.

Harry potter Party
Rainbow in the storm

So why am I lying on this sofa in the middle of a flare up and feeling happy about it?

Well I know the cause of my flare up and in most part predicted it.

I have been full of cold and infection, last week was a big week I didn’t have a full rest day instead I had lots of little rests, last week I went over my credit limit most days (Credits: Link) and I was the bell of the ball well the Hermione of the party. So I knew I wouldn’t feel tip top for a few days but some for me at least being able to predict when you are likely to have a flare up of symptoms makes it that bit better, for me I guess its like your taking some of this illness’s power away.

The recovery period was so much shorter both in terms of the length of my flare up, but more importantly in relation to fighting off the infection from tonsillitis/ cold, purely dosing myself up in the past would not have worked having this kind of infection previously would have knocked me for six. Instead my infection fighting skills seem to be almost getting back to how I was pre CFS/ME.

Length & Intensity of flare up has decreased very noticeably.

Don’t get me wrong these last three day’s haven’t been a walk in the park, I have cried in pain, dosed off in the day (which I don’t usually do) , stared aimlessly out the window as I coundn’t focus on the telly, I have eaten what’s the easiest for me to as I have been too fatigued to make good food.

But I have made it down onto the sofa each day without taking over an hour to get out of bed or had any trouble getting up to go to the bathroom like I talked about previously (Link)

The pain is bad, very bad but there are times where the brain fog lifts like right now and I can write on here which I haven’t done for a while due to party planning or watch a good film/ TV program.

Preparation and Prioritisation the rays that shine through

Over the past 10 days I have:

  • Visited a friend in Portsmouth for weekend (2hrs away),
  • Worked my allotted hours at work
  • Prepared for the party- made banners, posters and other decorations
  • Baked
  • Grocery Shopping
  • Prepared house for party
  • Hosted Party

That is a lot for even a person not suffering from CFS/ME, but what it meant for me was that I planned my credits really carefully the night before; like I usually do but where I could see there was the possibility of going over my credit limit (Link) for the next day, especially where there were more than one high level activity during one day I made sure I scheduled a rest break to try to conserve energy, this mainly consisted of short meditation exercises (Link) brief lie downs or 20 minute power naps.

I prioritised my week as follows:

  1. Self Care- medicines, food, checking on my cold
  2. Work- ensuring have enough energy to engage properly at work
  3. Party Preparation- Doing a little bit every day rather than leaving til last minute
  4. Household – Cleaning, tidying and food shopping
  5. Charity/Volunteer work
  6. Wellness exercises- Module from Toby’s program  or NHS work book
  7. Other social
  8. Blogging

Basically everything after number 4 didn’t get done and even then we hired a cleaner.

Even though I wanted to do everything, and old me probably could/would have done I knew I was already pushing at my upper limits so the none essential had to go.

Knowing your limits with this condition is key.

That being said I have seen progress in myself month by month, there is no way I would have been able to have such a busy time if it hadn’t been for the continued pacing, supplements, movement, diet and mindset I have been putting into effect over the past months (Index – Link).

So why am I happy?

I look back at what I have done over the past 7 days even 10 days as the previous weekend we went to stay with friends, and I look at what I am feeling now and I am happy I can see the rainbow amongst the storm, as this time last year, 6 months or even 3 months ago I wouldn’t have dreamed on doing this much in fear of a monumental set back, instead I took the unpredictability away from my symptoms.

I feel I am beginning to gain control over my life again.

Whilst I am in pain and my mind doesn’t always want to play ball, I feel that with the above preparation as well as various other self maintenance strategies I have talked about in previous posts and posts to come (Index – Link) I am gaining control of my life.

I am feeling more myself than I have done in a long time, even if that doesn’t mean my symptoms are gone, some are fading some are not and maybe they never will, but I feel I am gaining control and to me that is what matters, as it means I am beginning to feel like me again.

2 thoughts on “The Rainbow in the Storm- Checking in with CFS/ME

  1. I find that while the physical symptoms might be exactly the same, mentally there’s so much difference between a crash that’s happened for no fathomable reason and a flare up that’s due in part to doing something fun but out of the ordinary. I’m glad you were able to enjoy some social time at your party even though it’s left you feeling rough since. Hope things pick up for you soon.

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