So…I briefly talked about what finding out I had M.E did to me in my first ever blog, read it here, but with it being M.E awareness day and reading, watching so many amazing people sharing their stories like Kaeyi, I thought I’d go into mine.
It’s hard to believe sometimes that it has been 8 months since I was diagnosed with M.E/CFS…that’s 10 months of dealing with the symptoms.
The timing of this awareness day is actually pretty ironic for me. This is because today and yesterday perfectly summarize what the “healing” process has been like for me.
So yesterday was a totally amazing day! Ok so amazing is very relative, to most people it would be a pretty average weekend, but to me it was a taste of what being myself was like. We picked up a friend in Glasgow, took her to the SSPCA to adopt a new hamster, got totally soaked in the rain…it is Glasgow after all…this was proceeded by hanging out with her and the hamsters (cuteness!) The boyfriend and I then made a pit stop at our favorite Japanese place, Ichiban, for some tasty lunch, yey! With full bellies we then headed over to another friends place for planned tea and cake. We actually helped these friends move into this flat a month earlier, so it was really lovely to see them settling in! During the tea and cake chatathon a decision was made that my recovering vegetarian boyfriend should really try steak! Ordinarily this would have just been added to the perpetual list of things to do/try, however, inspired by the lack of pain and somewhat remaining energy, I decided we should all just go out and eat steak 😀 So of we trot! More walking in the rain, to the recommended restaurant for dinner. It was just such an amazing evening, we all had steak, we all were in love with the steaks, lots of laughter and merriment was had!
On the drive home I was starting to feel it….the energy levels had been very depleted and the aching muscles were returning. But not to worry, this was the start of getting better…my heart tried to convince my brain! After all this new medication I was on, Gabapentin, in combination with the other concoctions and alternative therapies, were now working!
I knew I had a fair few errands I had to do today, the car needed to go into the garage, I had lots of bank and post office type admin requirements to fulfill. It will be fine….*I hoped*
And it was! In the sense that I got them done…however since waking moving has been painful and very difficult. Even putting my boots on was almost impossible due to not being able to bend *sigh* walking was out of the question so taxis’ it had to be, grumpy words, and aggravated interactions were the common occurrence of today. For those…..4 hours I was out of the house I was just fantasizing about being home…on the couch…in bed…just lying down! Any position that would stop the searing, burning pain where my legs join my hips, to stop my shins from feeling like their were cracking, my feet from agony, my back from seizing up……yup all of that.
But through all that I kept in mind that I had an amazing day yesterday and at least I’m at the point where I can go into town and get these jobs done!
And yeah, I call this healing. Comparatively to where I was a few months ago…even last month, this is healing. I can put things in the calender now, cinema next Tuesday? ok, it’s Likely I can go. A friends BBQ in a few weeks, again it’s Likely I can go!
I still get a bit teary, a lump develops in my throat, when I talk about what I was doing before M.E. it’s hard, really hard to let that go. Having left school at 16, I worked, was independent and supported myself. After travelling and living abroad I came back to the UK to do an access course and try to get into Uni, which had been my aspiration since school.
I guess I partially achieved it……I did the access course for a year, I actually got into Edinburgh Uni, I slogged, I cried, I worked hard. I managed my money, juggled a social life, dealt with crazy life stuff. Being a mature student is so much harder than they let on….most students don’t have to deal with mortgage payments, health problems and dramatic marriage break ups…But regardless of how hard it was, I was there, I was on my path to a career I was passionate about. I was glad I didn’t go to Uni straight from school as I would have gone down a totally different path and wasn’t sure what I wanted to do…but now I do….then I did.
Last summer, working in a bar, doing academic research, socializing, having a relationship, I then got Bronchitis. It totally floored me! I had to keep working to keep up with bills, and I just didn’t get better. I think it took about 4 months for the infection to go, although the cough lingered a lot longer. It was at this point I realized something just wasn’t right. So me and the boyfriend moved out of the city, with the thoughts of having a quieter lifestyle may help, and I can just commute when necessary. This sadly was not to be the case…it was the beginning of the end, so to speak.
My health rapidly decreased from there. Within a few weeks I was unable to move about, could barely stay away and just felt terrible! This was proceeded by many doctors visits, although I was very lucky in that I seemed to get a rather quick diagnosis.
So a hard decision was made, and I took a year out of academic life. Again this was not meant to be. I had hoped that over the year I was re-coop, keep working on research, be healthy from all the vitamins and healthy living, but no. Even though some days are better, every doctor has told me that any big change to my lifestyle now, any dramatic increase in my activities, will make me relapse to the dark days….as evidenced by yesterday!
Again, it’s taken me a while to get to this point, and I am so so lucky to have the family I do (B and Phoebe), B is thankfully able to support our household on his wages, and it supportive in as much as he can be.
It’s scary, it’s an illness which makes you a dependent. Either dependent on the government or your partner or family, being dependent on others to look after you is hard for most, and very few people’s choice. It’s hard sometimes when talking with people (who aren’t as close) and they say they are envious that I don’t have to go to work, that I have the time to write a book, be at home, watch TV, read, make things….and it’s so hard not to get angry and snap at them; to say they obviously have no idea then how trapped I can feel, how isolated, how bored, how much agony I go through physically and mentally….but I don’t….because it’s not polite 🙂
Life goes on. So I can’t continue academic studies…right now. Perhaps in the future I can. What I can do is….write 🙂 As I’ve mentioned I’m writing a book at the moment, something which I’ve always wanted to do but never had the time or resources to do! Of course, it’s still that bit harder than if I didn’t have M.E (I keep taking breaks even writing this as my hands are quite sore!) but it’s still amazing 😀 I can still have an albeit reduced social life, I can visit places, experience things, enjoy life. As long as I listen to my body.
With this illness, everyone is affected differently and to different degrees, I get occasional brain fog (much less than before) and overall my mental faculties have remained the same, however physically I have had to completely overhaul my life to accommodate it. So this also means that while it’s good to talk to fellow folk living with M.E, not everything that works for one person will work for another.
I’ve mentioned before that I have a big belief in balance, and in some ways I’m trying to manage M.E by the same methods. Put the washing on, rest, throw the ball around for the dog, rest, write a section of my book, rest….for me it seems to be working. It’s taken 8 months but I’m starting to accept that my life isn’t going to be what it used to. That’s not saying M.E has won, it’s not saying that I’m just accepting the limitations and wallowing in them. What I am saying is that I’ve pushed and pushed the M.E and found where the boundaries are, so for now I’m going to work within them, every week, every month, I will probably push a little further, and sometimes I’ll get knocked back like today, but at some point I wont, at that point I may have pushed those boundaries a little wider and can fit more within them! It’s going to be slow, but if I take my time with it, only pushing little bits at a time, then perhaps the fall back won’t push back hard enough to send me into a relapse!
I hope so much that with people becoming more aware, that more research will follow, that there will be more understanding about a condition which is so toxic….in the mean time, try to be like a pear 😀