So as ironic as it may sound due to the nature of this blog, but my ME/CFS has taken a nose dive over the past couple months that I've been too ill do actually write!
Even today, I sit here in pain with a hot water bottle at either side of me, my arms aching, hands shaking as I try to type. I should also warn you that today is the first day I've taken one of the stronger painkillers, Naproxen, so this post my not make much sense as I'm feeling a little weird but I'm not sure if that's just the ME/CFS of the pills! It doesn't help that I hate taking these type of pills in the first place, as shown by my remarks to my mum after taking them... "They'll either kill the pain or me!"
So I've got a few things to update & talk to you all about but I'm going to do them over a few posts,(not all today) that way not I'm on going on too long & in danger of boring you all to death!
Ok first thing I'm going to discuss today is the whole "pacing" & having to give up doing activities & normal life stuff that as someone with ME/CFS, you simply can not do anymore. I know this May get a bit sad & depressing but if you're reading this & don't have a clue about ME/CFS then I'm hoping this will give you incite to what life is like for those of us that have.
Now, as I think I've mentioned in my very first post, my passion is horses & horse riding. When fighting fit, I would spend a good couple of hours at the yard & in the saddle, at one point, riding & training was actually my job! I could ride & then come home & clean the house or go shopping. I hated (& still do) not doing anything, I was such an active fit person! But then through the course of the past year, I found I began to ache more & experience pain after my 30 minute riding lesson, I was exhausted & this made everything else I wanted or needed to do a major effort. Pushing myself in the end made me more exhausted & at times I would just give in & take to my bed & sleep a day away!
For me that wasn't normal but when it came time for my regular blood tests (due to my thyroid & anaemia) everything came back normal & as such I just pushed but all the time wondering what was wrong with me because I really didn't feel right within myself. Eventually as you know I was told I had ME/CFS. At the time, I tried my hardest to carry on doing the things I loved - one of the main things was Horse riding! I really didn't want to give that up but I had my last, though I didn't know it was going to be my last, riding lesson back in September. For a while I'd book lessons & then have to cancel them because I just wasn't well enough & also because I didn't want to put myself through the agony I'd undoubtedly be in after riding. So I finally gave in & told my instructor that I was going to have to stop, that was one of the hardest decisions & messages I have ever had to make & write!
After I officially stopped riding, I found I levelled off a bit, I was managing to have a little wonder around a shop (which I love doing!) do a bit of walking & in general get out the house a few days a week. I began to get a handle on the whole "pacing" thing, do something one day, rest another. It seemed to be going well...
Then a few weeks ago, I took a nose dive! I'm not exactly sure why it happened, maybe I'd done too much the few days before, I don't know. But for whatever reason, I ended up in major pain for 5 days & no amount of paracetamol or Nurofen was helping! So back to the doctors I went & was given Naproxen to help if & when I get really bad pain (like today) I was also sent for an X-Ray to get my right hip checked as this seems to be the place a lot of my pain starts but that has come back normal so another weird ME/CFS mystery remains unsolved!
Since then, I've pretty much, in true Mrs Bennett style (pride & prejudice) have taken to my bed, only with less vexation & bonnet wearing. Though I have been know on occasion to don the funky bobble hat my best friend gave me! Now one good thing about this is I'm getting proper rest now but I do know that full bed rest isn't good so being an avid tea drinker is finally paying off as I'm making, all be it slow, trips down to the kitchen to fill my mug regularly. Now last week I spent most of the week in bed, only feeling up to venturing out to see a couple of friends to pretty much sit & chat a little bit a couple of times. This is really now all the activity I can do, the little wonderings around the local Matalan & Asda looking at clothes have stopped.
My main link to the outside world is now my trusty mobile & the very iPad I am typing on now. In fact this iPad has been invaluable! For with it I am able to browse shops & buy something if I want too & see what my friends are up too & "chat" to them. It's also helped me catch up on the latest series of Sherlock - there's nothing like a watching Benedict Cumberbatch solve a crime to make a day stuck in bed turn out much better! A huge thank you should also go to the BBC iPlayer there as well! Oh & while I'm thanking people & things, I guess my main thanks should go to the magic box proving the WiFi sat on our hallway from BT as without that none of the above would be possible - Thank you BT! (I did warn you this might get weird!)
Ok for all I kinda joke (yes the above was suppose to be funny, so I hope you laughed!) about my situation & in general I do my best to smile, laugh & generally try to stay positive through this whole experience as I'm trying to see this a way to learn more about myself, my strengths & weaknesses & to learn how to adapt & learn how to accept what my life is now but not to see that acceptance as giving up but a way to fight & keep working toward recovery, because that is possible! But I'm not going to lie, there are days when feelings of sadness, loneliness & feelings verging on depression take over. There are mornings when I open my eyes & feel utter disappointment that I've actually woken up to suffer another day of pain, of brain fog, of feeling like I've got the worse flu known to mankind!
Now when these hit, I go one of two ways: sometimes I indulge them & feel sorry for myself & generally walk around looking like Grumpy Cat, other times & usually more often, I do my best to shake off those feelings, plant a smile on my face & remind myself that there's always someone worse than me & life is a gift to not take for granted! If that doesn't work, I usually end up on websites like Amazon, eBay, & a personal favourite right now is Not On The High Street. I rarely buy but just browsing for a short time is like wondering around actual shop & it makes me happy.
So ok this post actually may seem a bit everywhere & with little point achieve (I'm blaming the Naproxen!) but I guess the main point I'm getting that is that yes people who are suffering from ME/CFS have pretty much had to give up everything they love, in most cases, these people were likely some of the most active anyone may know. So if you know someone with this illness, please cut them some slack, they are likely more upset than you that they can not make that social event with you or to simply pop round for a brew & chat.
When they do manage to get to some event, don't make them feel guilty for missing the last one. Please remember it's taken a huge amount of effort & energy for that person to be stood in front of you, looking the best they can, all the while their body is likely screaming at them! Just look at your friend, smile & tell them you realise the effort it must has taken to get there & you a grateful for that!
To my fellow ME/CFS Fighters, yes we've have lost a lot but trying to hard to not focus on those losses. Try to see what you are still able to do & focus on that (easier typed than done I know!) & try to see things from a different angle - put a positive spin on a negative - "yes I'm stuck in bed, not feeling great but at least I've got time to read that book, write a blog post (see what I did there) or catch up on that tv show I missed." Also remember that the losses we are facing, they're not permanent as long as we keep smiling & fighting! I can guarantee you that one day I will get back on that horse!
I think I'll leave you with that final thought as my mug is empty & is crying out to be filled. So it's off down to the kitchen I must slow go.
Take care all of you & please feel free to leave me a comment.