So it’s been 11 whole days since I posted to the blog, I got back from my trip last Wednesday (19th) and have been struggling ever since. More bad than good. I’ve been away a while so I have a lot to say, I don’t expect you to read it all.
I’ve Ummed and ahhed about what to write, both about the trip and about me on the trip because it’s complicated. I can’t always understand that well myself so I’m not sure how to expect others to. In addition, I don’t want anyone else to feel upset in any way because of what I say…. So it’s tricky. I can only hope that people understand that I’m trying to keep telling my lived experience. No one said it was going to be easy.
First off, let me just say that I am oldest of four siblings and this has instilled a great sense of responsibility in me. Also, as you already know, I am passionate about family and those I love. I firmly believe that wherever possible, you should put yourself out for family, far beyond what you might normally be able to do for yourself. Especially for those who need extra help staying on their feet (physically, emotionally and financially if you have it, which I don’t anymore).
With that in mind but also not wishing to share business that’s not mine to share, just know that this trip was not (in my mind at least) ever intended to be a break or a holiday for me. I was going to ‘work’, to support someone that I love and care about very deeply who I knew needed me.
Mr M.E. and I both knew that would mean pushing far beyond my physical limits. We knew it would mean living on strong painkillers (dihydrocodeine to be specific), messing with my routine and food, disruptive sleep and ultimately paying a heavier than usual price when I got home. Because things that seem simple for others on the surface, well, I can’t do them for long or consistently.
Mr M.E., with no malice in his heart whatsoever, begged me not to do it. I told him the same thing I do every time, “when it comes to my family, please don’t ask me not to, my heart is one of the reasons you fell for me in the first place”.
I cannot tell you how much I hate going against his wishes and concern for me. I bloody hate seeing the pain and worry in his eyes and the helplessness that he knows he can’t stop me and what the ‘price’ will be.
As my CFS/ME has progressed over the last few years, the maximum amount of time I can ‘be normal’ is usually only about four or five days. The trip was for seven days so I was worried about what would happen if I fully crashed whilst I was down there.
The first couple of days were normal symptom-wise, the symptom payback cycle usually doesn’t kick in for me for at least two days so for those first two days, I rammed it in, activity wise. The person I had gone to support urged me not to do too much, they also told me in no uncertain terms that they did not expect me to do what we both knew I was planning. They were upset, they didn’t want me to make myself sick, I could see guilt, fear and heartbreak but I was determined and that is on me and me alone.
What a lot of people don’t know about people who get CFS/ME is that statistically speaking, we are more often than not, goal orientated, driven, type A personality kind of people and most of us were more physically active and successful than the average prior to falling ill. Succinctly that describes me, so I had set myself a goal to help and I planned on reaching it, whatever the personal cost.
I know it is extremely foolhardy on my part but because of the controversy that surrounds whether CFS/ME is really a physical disease or not and the assertion by a certain utter twat of a former psychiatrist who largely shaped the ‘yuppie flu’ idea of CFS/ME in the 80s and 90s, I still feel the need to prove to myself a) that I can still do things and b) that I’m not making up or imagining what happens to me.
And I am afraid. I have said so before.
I am afraid at the age of 43 that if I only ever did things when I genuinely feel well enough, I would never do them at all. I am afraid that people might think I’m ‘just tired all the time’, or that ‘I don’t try hard enough’ or that ‘if I only pushed through I’d be able to do more/work’. I am afraid that if I don’t push myself to do things that I’ll grind to a halt altogether and that would be disastrous for my self-esteem and mental health. I am afraid that the less I do, the less I will be able to do (what the doubting Thomases call deconditioning theory) I am afraid of becoming a complete recluse/shut in….
And so yes, I know I push myself beyond my limits, especially for people I care about, but I do it because I’m afraid to end up useless and old before my time. I’d rather overdo things and pay the price and feel like I’m dying just to know I’m still alive and I still have value. Also, I hate letting people down, I do not want to be just one more person who has let down the people I love, I want to be the one thing they know they can count on if all else fails.
I planned that days three and four would be less physically strenuous and they were. I took my Dad to see his Dad, my Granddad, as I always do when I am down home and that’s all I did on day three. On day four, I had a lovely long, quiet sit down with Welsh Wonder Woman, it was Easter Sunday, and she taught me how to make a Website and Twitter account for the blog (www.therealmecfs.wordpress.com and @therealmecfs). Then we all ate heartily of my mum’s most excellent cooking. It literally doesn’t matter how old you get; mum’s cooking is still always the best – am I right?
On day five and six, I was struggling, I didn’t get going until the afternoon on day 5 and my luck ran out. On day six I gave it one last push and I did myself in, by tea time, I felt really unwell, so sore and stiff and nauseous that when I saw my mum I just kind of sagged and asked for a cuddle. The thing is, I don’t really know or understand why I can push myself so hard for others and not for myself, it confuses me and makes me doubt myself. Maybe I am just lazy when I get home? (Mr M.E. says this is ridiculous btw).
On the day I was coming home, I was so sick that I wasn’t sure I could even stand the car ride to the airport, never mind the whole plane journey. I stopped by to say cheerio to mum n dad and they looked a bit worried. My right eye felt like an ice pick was being driven into the back of it and I had a throbbing headache all down that one side of my head. I was sure I was going to be sick but I couldn’t eat with the pain so there was nothing to come up.
I had to lie down for a good half hour before I could get in the car and my sister asked me if I really should be trying to travel, I just grabbed a sick bag and told her to go for it, my flexi ticket was not so flexible as to allow for a change at such short notice and I didn’t have the money for another one…
Luckily the airport was almost empty, I got through security quickly and headed straight for the quiet room, the plane boarded a little early and I put in my ear buds and fell asleep. I might have snored (embarrassing) but there was no keeping my eyes open. I don’t remember much else, everything was kind of down the end of a long white tunnel, distant and surreal but I made it home. I collapsed onto the sofa and stayed awake long enough to see Mr M.E. get home from work, then I fell asleep on the sofa as the football started. I remember Mr M.E. ushering me through to bed and that was it….until lunch time the next day.
That was Thursday. I’ve slept in til lunchtime on four of the days since, there’s no stability in my routine or how I feel but I need to get it together because a photographer is coming tomorrow. As part of my activism/volunteering for Action for M.E. I agreed to be a media case study ages ago, they’ve written an article and now want pictures for it. It might not get published, (it didn’t last year but they are trying again) so wish me luck.