It was inevitable: it’s winter, I am running central heating for the first time in 2 years and I’ve just been through a house move, which for someone without ME would be stressful, but for someone with CFSME is doubley so.
Yup, I’ve got a nasty horrible cold. My nose has been blown constantly since Monday, I’ve graduated from paracetemol to Sudafed Max, and for the last 2 nights I’ve been waking up with one of those ticklyickly coughs that catch you in the back of your throat while you are sleeping, makes your eyes stream and your home resound with loud night time hacking until you fall asleep again.
Wow. So unusual! Hello common cold, not so common to me!
It’s also a complete novelty having what someone would call an ordinary everyday illness. I feel so unwell all the time with ME symptoms that having a bog standard ordinary cold is, well, incredibly unusual and I’ve got to admit also a bit intriguing.
It’s got a beginning, middle and end. I know what to do to help myself recover from it, I recognise what my body is doing and it’s got medication to treat it and everything. Plus, other people get it as well and there’s no contention about what causes it either.
Being unwell this week has made me look back on my journey with CFSME positively
You see this is exactly where I was at, exactly 3 years ago. It was this illness that changed me then – because after the cold I had then, turned to flu and a chest infection which laid me up for a grand total of 6 weeks, I had the first ME symptoms.
Back then, I didn’t have ME but if I look back on it then, I recognise that certain symptoms were the prodrome – or initial symptoms of the illness.
You live and learn, particularly if you are an ME patient because there’s the combination of how it affects you personally and the lack of direct medical care once you have it, to deal with.
This week I’ve been surprised by this cold and it’s done something else surprising as well. It’s made me realise how far I’ve come in dealing with my health better – and that’s down to the journey over the last 3 years.
In no particular order, this is the list of things I’ve learned and do differently since that first common cold 3 years ago:
- Having the common cold is a risk to my overall health because I have ME: I didn’t have ME then, so I didn’t know about the link between infection and symptoms and functioning. Back then, I was working, I had to return to work before I was properly better and I had a belief that it wasn’t that serious so I could carry on most of my life as per normal-ish. That was wrong and something I don’t do any more. This cold is a risk to my short and long term functioning. I have been treating it now, as if I was treating something like pneumonia back then.
- It’s a risk: didn’t grasp it first time? It is. I have to manage that risk, no-one else is going to – it’s down to me.
- It’s different having a cold when you also have CFSME: Yeah, it is. That inner thought you have about “It’s only a cold,” is not going to do you any good. Replace it with: “I have a cold and I must treat it properly or I’ll end up crashing and being much, much iller for much, much longer.” Experience of having a crash or setback is frightening enough to have made me pull my socks up once I started sneezing.
- Rest: The fatigue a non-PwME has whilst getting over an illness is nothing in comparison with the fatigue I feel whilst being ill and afterwards too. Again, experience has shown that I need to rest, rest, rest. It might be boring, there might be jobs to do around the house, people might want things of me but nope, sorry. I have to rest. Talk to the hand if you don’t hear me.
- Medication, yes or no? Like many PwME I am sensitive to medication. However that doesn’t mean that I have to suffer this cold without taking anything that might make my symptoms better. So, I’ve chosen my poison, as it were and am trying to keep a lid on the worse of the congestion and coughing that way. This is helping my sleep as well, which, I’ve said before, is an essential part of my ME self management- programme. I have to have a good night’s sleep or all hell breaks loose.
- Antibiotics? No way. I am averse to taking any sort of antibiotic at all. During the flu 3 years ago I took 3 different types and Tamiflu. I’ll never know if they helped cause me to have ME, but I’ve always suspected there might be a link so no, I’m not going to the GP for antibiotics. Not unless I really have to.
- Don’t do anything else until you are better: I have moderate ME which means I can leave the house and have enough available health to write blog posts like this. Thing is, if I don’t do all of the above, I soon won’t. So this will be the last point in my list of things I do differently!
Then and now
I was sooooo naive then. I didn’t know better. I let life continue and I know, in my heart, that I didn’t do everything I should have done to take care of myself and recover. I am a post-infectious onset ME patient and although I don’t think there’s blame at my door for ultimately having ME, there is blame at my door if I don’t take care of myself properly now I’ve got it.
I take care of myself far, far better now than I ever did then and I’ve found the comparison between then and now really encouraging this week, while the tissue mountain grows and I feel like crap. At least now I take care of myself far far better and I refuse to do anything that could put me way back then…
The health I’ve grown and gained since has been too hard fought to throw it away on the common cold. Begone!
© Lindy 2015