Crash and Burn: An M.E. Story

Today is the first day in six days where I am in the right place in body and mind. I've been locked in a crash which has lasted for six days. I over did it on Tuesday with friends and kept pushing myself for hours in order to have a good afternoon but the payback has been awful. I take full responsibility but it has served to remind me that I need to take control. Again!

Some days I live in a complete fog of medication and fatigue anyway. I am used it now, to some degree, but i do find that i still slip up and don't manage to pace myself which then just knocks me sideways for two or three days. When I really crash, my M.E. seems to notch up along with fatigue pain and huge dip in mood, understandably. I am quite good at just battening down the hatches, resting and recharging and so on, but six days is pretty unbearable!
I would love to go out or have friends round for hours on end as i used to, but the payback is becoming more and more severe. At one time, i might lose that evening, or the next day would be spent on the sofa napping and taking extra meds to manage increased pain and discomfort but over the last year i've noticed the fatigue runs in to two, three or more days where i can do very little. This has a very negative impact.My current rating on the scale is 20. The scale is as follows:

		ME/CFS & Fibromyalgia Rating Scale
100		Fully recovered.  Normal activity level with no symptoms.
90		Normal activity level with mild symptoms at times.
80		Near normal activity level with some symptoms.
70		Able to work full time but with difficulty.  Mostly mild symptoms.
60		Able to do about 6-7 hours of work a day.  Mostly mild to moderate symptoms.
50		Able to do about 4-5 hours a day of work or similar activity at home.  Daily rests required. Symptoms mostly moderate.
40		Able to leave house up to 5 days a week.  Moderate symptoms.  Physically active 3-4 hours a day.
30		Leave house several times a week.  Moderate to severe symptoms.  Active 2-3 hours a day.
20		Leave house once or twice a week.  Moderate to severe symptoms.
10		Leave house occasionally.  Severe symptoms.
0		Bedridden.  Unable to care for self.

 The ME/CFS & Fibromyalgia Self-Help Program

http://cfsselfhelp.org/

Over the last few years I've fluctuated between 20-30 and before that I existed between a 40-50 and up until 2016 between 50-60 with occasional crashes. M.E. can ease and worsen through careful self management but mine has become more difficult as the years have progressed.
I have recently lowered my nerve pain medication by a third and i have to say, it's tough going. I'm well aware of the withdrawal symptoms as i've been through it with opiods in the past when my pain was much worse and my pacing was zero. This will also be lowering my energy levels as the symptoms are tricky.
I'm trying to keep my sense of humour but i'm noticing that that too is preventing me from keeping to what little routine i have. My writing is my work each day. With limited energy levels, there are things to do each day that keeps me life purposeful, such as taking care of my boys and cats, writing, keeping in touch with my loved ones and looking after my home/plants/little visitors to the garden
For me, with that routine gone, my purpose is lost. I don't know if this is because i was a teacher for twenty years and felt quite defined by my career or just that human 'need' to matter and to have purpose that keeps us all sparky and optimistic.

With my sense of humour, I usually bounce back. I don't dwell on little issues and either dismiss them or deal with them swiftly. When I can't fulfill my personal obligations each day, then I am lost. It may sound dramatic but when I'm dealing with these elements all at once, it feels dramatic! Like I'm in the middle of a whirlwind and I'm just hanging in there but not entirely sure how. My symptoms, as below are a veritable cauldron of varying doses.

In a crash, I lose time with my boys. My cooking and prep skills go to to the wall so the boys see me making dinner - freezer teas or even takeaways if too ill - and we eat together but i'm absent for them emotionally and physically which makes me feel terrible.
I stop writing. I can barely think let alone write creatively and this then becomes a real battle to write a few hundred words a day or nothing at all.
I stop reading. Writers read. Avidly. It is part of who i am. With my routine and daily challenges unattainable, my mood dips and i become very low. I used to drink to cheer myself up (i know- not my best behaviour) but as I am only drinking at weekends now, i sip herbal tea and just feel miserable.
I hark back to my previous life, find myself looking through photos on social media when i went out more, when i danced, spent full days at festivals and at friends' houses sometimes staying over and thinking nothing of it. And again my mood dips. By day three i don't know if it's fatigue, depression or a bit of both that are keeping me under my blanket.

Pacing as self-management should not be seen as a treatment, but more as a way of coping with the impact of M.E. Taking a balanced, steady approach to activity counteracts any tendency to overdo things. Keeping your activity levels within sensible limits avoids overly aggravating your symptoms and prolonging the recovery phase after the increased activity. 

Action for M.E..

Every action of mine takes a little of my energy store. I'm like a character in my boys' computer games when they shout 'No i'm gonna die - my energy is only on 5%!' and they lose all the steps they've taken to complete a level. Some days I do feel like that. Death is not my demise but the death of my productivity in that day.


Pacing myself is at the expense of others but its essential to keep me on an even keel. I have started looking at this not as being selfish, but as it being an element of my self care. I'm currently working through a fabulous publication by Action for ME which is helping me set a daily schedule. This is how it is looking:

Daily Schedule Morning Routine6.30am Cup of tea
8.00am Get ready
9.00am Writing
11.00am Rest

 Afternoon Routines12.00pm Lunch
1.00pm Research/Time with friends
3.00pm Rest

 Evening Routines5.00pm Cook dinner
6.00pm Dinner
8.00pm Rest
10.30pm Bed/Reading/Sleep

I've taken it one step further for me personally as I'm awful at pacing as a rule. Here I've allowed myself an hour for each activity with a maximum of two hours.

Key:

Green  = activity (1-2 hours max)

Amber = light activity (30mins - 1 hour)

Red      = rest (unlimited)

Daily Schedule

Morning Routine

6.30am Cup of tea

8.00am Get ready

9.00am Writing

11.00am Rest

 Afternoon Routines

12.00pm Lunch

1.00pm Research/Time with friends

3.00pm Rest

 Evening Routines

5.00pm Cook dinner

6.00pm Dinner

8.00pm Rest

The book helping me at the moment is provided in the link below and I'm finding it incredibly beneficial. 

https://www.actionforme.org.uk/uploads/pdfs/Pacing-for-people-with-me-booklet-Feb-2020.pdf

 The booklet suggests with correct pacing, activity time may increase which would be great, but I'm more interested at the moment at getting a balance and not crashing quite so spectacularly. My biggest worry is upsetting others and letting them down. I'm learning how best to manage this too.

 For example, if somebody doesn’t understand the medical explanation of M.E., or how you are feeling today, they may understand it if you explain how long you might be able to walk for before needing to rest. . . You may need to be more assertive. Assertiveness is a clear style of communication, which expresses your own needs, while acknowledging the needs of others. It is a midway between being passive (just giving in, for an easy life) and being aggressive (being pushy, to get your own way at all costs). 

Action for M.E. 

My initial reaction is to plan in 2-3 activities involving others each week and if should that involve coming to the house, i should be putting a clear time limit on it. This could involve me going to lie down to rest after a certain amount of time has lapsed so that i do get my rest time. When visiting others, it is easier as I book a cab for that time and go home. I need to be a shade braver. Putting in boundaries is an important element of self care yet one I often ignore as it involves being assertive! Must try harder.

I also need to share tips with my gang so they understand I'm not just being awkward; I genuinely need to pace myself.

The help you offer is likely to bring benefits to you as well as to your loved one. For example, if you help your loved one to pace herself, she is likely to have a much more predictable life, reducing uncertainty for herself and those around her.

She is also much more likely to be able to expand her activity level and therefore able to do more without making her symptoms worse. And if you help her get better sleep, she is likely to be less irritable and able to think more clearly.  

Bruce Campbell; How Families Can Help People with CFS or FM

  

The dream would be being able to take part in activities for longer but this process involves trial and error which takes time. I've been here before and no doubt i'll be here again! There is a way forward. I've used a daily diary before to organise my time and think that this will work as a way of me compartmentalising my day to include 2-3 light activities then 2-3 heavier shorter activities, but then reduce it if that's too much.
The main element to take from this is scheduled rest. I will need to schedule these in. I also need to learn what rest means here. I'm very good at replacing one activity with another such as a film or book while rest needs to be inactive, distracted and recharging such as sleep, listening to music, sitting in the garden, meditation - less stimulating activities, namely, those activities I do as part of something else. Always learning, I'm reading around the subject and finding those restful practices that will help me recharge. I have time. By keeping a diary and limiting activity while building in restful practices, I am hopeful that my symptoms will improve.