This is my first post for M.E. Awareness Day 2017. I have spent the past few weeks trying to write a few posts about the sides of M.E. that people might not know too much about.
This post focuses on my recent (thankfully near miss) of a larger, detrimental relapse, that came on unexpectedly couple of months ago.
I never really thought of relapsing as a symptom of my illness, more of umbrella term for when my health declines and it takes months or years to recover from that downturn. Over three years ago I suffered a relapse, making me really worse than I had ever been, partially due to developing a dysfunctional bladder, also known as, Fowlers Syndrome, and partially to thinking I was better than I was and over doing it. Unfortunately, the combination of the two along with the years since full of tests, procedures, medications and two operations means I have not yet recovered from that relapse. It has been a hard three years, I lost even more of my independence both outside and inside the house and have not gained it back. I hope that gives a bit of context for my thoughts on what I've written below for the last few months.
What happened recently?
In December 2016 I started treatment to alter my gut bacteria, called FMT (Fecal Microbiota Transplantation). I began with an intensive nine days of treatment at a clinic, and now I am carrying on at home biweekly for the foreseeable future, however my body has been all over the place with it and the end of January and beginning of February were really difficult.
I forced myself out the house to see my friends during the period one day in February, even though I felt shocking and physically I knew I shouldn't, but mentally I needed a bit of colour in my life. When I got home I realised if I didn’t stop, if I didn’t take a breath, I would suffer another big relapse. I was absolutely terrified and devastated that my body was punishing me further. It hit me then that 'relapsing' should be treated like a symptom because it needs to try to be controlled, prevented and eased. I should look at it, for example, like my headaches. I try to stop them worsening or halt them before they get too bad and that is just what I should do if I am feeling like a relapse is going to come, rather than ignoring it and heading into a downward spiral.
Ten years into this illness I have had to, through trial and error, learn a lot about what my body can cope with. It took me years to learn the signs of when I was about to have a short or long term relapse, but had never really managed to see the signs in time. But this time I recognised it and was determined to do something about it.
What did I do?
I postponed all appointments, all outings. I usually am able to go out the house once a week but I cancelled that for several weeks. I crossed a whole load of things of my to do list and focused in on re-adjusting my pacing and planned my activities at home around anything I could do positively to keep my body from breaking. I have a pretty strong morning ‘routine’ that sets me up for the day. As I hadn't actually hit the relapse yet I was trying to still able to keep my morning routine but I quickly I omitted anything that wouldn't be restful. I'm glad I took this because my glands were definitely up, which is another huge warning sign. I just needed rest, heated blanket, a gentle audiobook every morning and all afternoons, for a few weeks. I got to do alot of thinking in this time and one of things that occurred to me was that my afternoon and early evening routine and had gone a bit haywire in January. I wasn't pacing myself correctly. I was attempting ‘activities’ for too long, for example, sitting on the sofa for more than I could realistically cope with. I think this was because after my initial gut bacteria treatment I suffered with one of the reported side effects; low and disrupted mood. The winters are always difficult but in January and February I was really struggling and crying all the time with low mood, loneliness and agitation! These desperate feelings were making me use energy I didn’t have to do things to distract myself. No wonder I felt like a relapse was due. My use of energy ‘spoons’ had gone completely wrong.
Reading this you might think it seems like an easy thing to fix, but it is hard to get the pacing right and it is quite lonely task to re-plan my days for when I felt I was out of the danger zone, as only I can know what is suitable and what is not.
During my self-allocated step back I slowly thought about my new afternoon pattern. I'm happy to say a couple months on, I think I've just about found a good balance for my afternoon, like my mornings. Now down the line I have created some pacing charts again, which have very helpful and have multiple alarms on my phone to remind how to space things out. I'm still trying to work out my evening routine, where frustration can set in but it is getting there!
The other thing that was a huge influence was that in sheer desperation we re-started my previously mentioned treatment at home, sooner than I had planned. After the first treatment I felt like my symptoms had steadied but not improved. I was still pre-relapse. Slowly but surely with weekly treatments have helped me re-gain my energy levels pre-treatment (thankfully)*.
Learning
I have learnt that is it is important not to see relapsing as this huge thing that is looming and could strike at any time but treat it like any other symptom that comes with M.E. It is just a bit bigger, mainly because it makes every other symptom worse, and takes more precaution, a bit longer to get over and can’t be eased by one individual thing. If I keep an eye on the warning sigs it probably won’t creep up on me over night and I can deal with it much better in the long run. I was highly distressed to find myself in a pre-relapse state but having avoided it this time I now have the knowledge and the tools to try to not let it progress to a point where I can't fix it. M.E. will always be one step forwards, and two step backwards but this time I am working towards making those steps much smaller by seeing them coming.
But why?
Essentially the intensity of the initial treatment and pushing my health in order to receive treatment but put my body in a poor state for a while. Perhaps I shouldn't have tried to go back to my normality so soon causing me to head down the dark tunnel for while. I don't think I can say one hundred percent this is why I relapsed, it may have happened even if i hadn't of gone out the house for a month after treatment, or even had treatment at all. I try to use my experiences and events to inform my handling of my condition, but once I've used that experience I don't dwell on the ins, outs, ups and downs because that, in terms of my mental health, is a recipe for disaster.
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*Update 2018: Information on my FMT treatment in the the following blog post FMT and ME: Part One Why?
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