For Your Information 2.0 - A Year of Diagnosis & Writing

Hi I'm Louise/Lo & I've been on this earth for a certain number of years, so many months, a few days, who knows how many hours, minutes, seconds & a year & 2 weeks ago, I was told that I have Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (M.E)

Yes, today marks a year since I began this Blog.  I've never really discussed my diagnosis & the effect it's had & I guess this part of my story fully.  So I've decided to be brave, as I don't really go into this part of my illness very often, but I think this is probably an appropriate time share this with you.

After a few years of being ill, a diagnosis came with mixed feelings, in one way I was relieved as I finally had an answer to what was wrong, but in another way I met my diagnosis with anger & great upset.

Before I was told what was actually wrong with me, I'd been told so many times that this was just how my health was going to be, so get on with it.  So I did & I'd learned to accept that & I was still able to take part in life for the most part, mainly because I pushed myself to the limit to do the things I loved. 

After hearing the words, "you have Chronic Fatigue Syndrome" & "you need to now slow down, you can't be so active anymore" I felt like I had literally died!  I'll admit right here & now a couple of things; firstly I didn't really understand or know fully know what Chronic Fatigue/Myalgic Encephalomyelitis was & secondly, the words "you need to slow down..." didn't compute one bit with me.  In fact that very same week, only a couple days later, I took myself off for a walk on the promenade where I live, on my own & just absorbed my surroundings.  I walked right to the end of the jetty & back (if you know the area, you'll know how far that is, also see one of the pictures I took that day below), all in all I was walking for well over an hour (not really the best thing for me to be doing right?) & when I got home, I was exhausted & in quite a bit of pain.  I've actually not set foot on that jetty since.

Now you'd think that would have made me realise that I really should start taking it easy?  Nope!  I'm a stubborn determined sort of person & I was in the mind set of not letting anything change, life would continue as before but the only difference would be that I now had a name for what was wrong with me.  I still went out a number of times a week, I still wandered the shops, I drove a lot & of course, I still went horse riding.

From my diagnosis up until the end of last year, I had to have a monthly check up or really check ins with my doctor.  Each time I went, I was told I was being too active & I really needed to slow down in order to let my body recover.  Towards the end of Spetember, the pain I was experiencing was gradually increasing, especially after I'd been riding & by October, I'd had to give up one of my made passions in life, cue more upset, I felt like in having to give up riding, I'd given up a part of myself.  I felt incredibly empty & lost.

It was from this point on, I pretty much saw everything I'd enjoyed doing, slowly get knocked off my activity list.  Towards the middle of December, I hit an all time low, my symptoms were worse & I was bearly leaving the house.  Though I did my best to keep my mood up for the most part, I was going through a process of grieving.  I didn't realise this fully until I began to slowly educate myself on my illness, I came across other people with this illness & read their experiences & how they handled it.  In one such experience, the person made the point that M.E takes your life without killing you.

This point hit me hard & made me realise why I was feeling like I was, (like waking up each morning was a huge disappointments that I'd actually woken up!) that it was okay to feel that way because it was actually normal for what I was having to deal with, which was loss.  Loss of my health, loss of the life I had & loss of friends & family that no longer were around.  It's true that you really do learn who your friends are when times get rough, but I tell you now, the people who are sticking this out with me, are truly the best group of people I could ever ask for & I love & appreciate it every single one of you!  I've even made some amazing new friends that truly keep me on the up every single say!  So with this "revelation" I began to go through my own grieving process & with that, ever so slowly, came to have an acceptance of what my life was now becoming.  This was my new "normal" & I was & am even now, okay with that.

I cannot tell you when I hit full acceptance (sometimes I wonder if I really have), it happened so gradually, but there was certainly the start of a change in me around March, after my first major M.E Crash (something I wasn't too keen to revisit anytime soon) & it was also around the time I began juicing.  With that, I felt like I was in a better place mentally to educate myself more fully on my illness & how to go about dealing with it properly, instead of trying to ignore it, as I had done in the beginning.

During this education process, I came across a wonderful community of people dealing with same things I am & their knowledge & experience was a truly a blessing.  It really showed me that even from something so awful, comes something amazing & the Spoonie community around the social media that I am a part of is full of awesome people, inspiring, helping, & encouraging one another to keep going & not to give up in the face of this illness.

With all this has come a new found love of myself & my new "normal".  I have learned to celebrate the small successes, the simple acts of getting out bed, of getting dressed, making my own cup of tea, leaving the house to see people, & even every post I write, I take as a small victory.  Yes for certain activities there is payback but I'm slowly learning to not allow the payback of a symptom flare from a certain activity to overshadow the fact that I achieved doing something.

I truly believe that it's the appreciate of the little things in life, the small victories that help me cope with this illness.  One major thing that I has helped & something that no illness will ever be able to take from me is my faith.  I have felt this past year my faith in my God become stronger & I know for a fact that without that, I likely wouldn't be here.

I also have to say that another good thing that has come from my illness, is this blog.  I already had another blog but I started this one purely to document down my experience of this illness & to use it as an outlet to get a sense of what I am dealing with, to get my thoughts down.  Writing for me has always been my main go to in order for me to make sense of things I'm dealing with & doing this weekly when I've been able to has really helped.  However, I never expected the amount of followers or views I've had over the last year & I am so so thankful for every single person that has taken the time to read even just one of my posts.  It makes the effort of writing, truly worth it!

So there we have it I guess.  I never normally allow myself to look back, because I believe looking back & dwelling on the bad times can often stop you from moving forward.  However, looking back over this past year has helped me to see what a journey it's been; from diagnosis to where I am now, in acceptance of what has happened to me.  Yes I'm pretty housebound for the most part & yes there are plenty of days where that fact gets to me but it also makes me even more grateful for the days I am able to leave the house, even if it's a treatment day & I just know I'll be in bed for next few days after.  I cherish the days out & they make the pacing & staying in a little easier to bear, along with the payback.

Though I'm having treatment now, I'm a long way off being better.  I've got a long road ahead of me yet & I'm learning to be patient.  Dispite what onlookers may be thinking or seeing, which is that my treatment isn't working (this is why I hate it when people throw around the word cure with this type of treatment), my specialist is incredibly happy with my progress.  The fact is, my progress right now, cannot be seen on the outside, my progress is taking place on the inside.  My body is beginning to respond to my treatment & it's slowly starting to work properly again, which is the result we are wanting!

So even though I know everyone means well, please, I ask you, hold back on the "aren't you better yet", "isn't your treatment working" or even the "are you feeling better?" which comes with a hopeful look from the person asking & just willing me to say yes.  But in truth, right now, I'm not really.  I'm the same as I've been since before my treatment started (I've not gotten any worse) & it's going to take quite a while before I'm actually feeling better.  So just as I'm having to be patient, I ask that everyone else be patient too.

I'm looking forward to what the next year will bring, what challenges I'll be facing regarding my illness & what progress I'll have made.  Who knows this time next year, when I'm asked "Are you feeling better?"  I'll be able to say yes with a huge smile on my face!

I hope this has given you a little more incite to, me, I guess & my journey & experience so far with my illness.  I hope that all my fellow M.E Warriors are doing as well as they can be.  Please take care all of you & I thank you again for taking the time to have a read of my blog.

I now won't be posting until after the Bank Holiday (25th August) as I'm away for that weekend. I will be documenting my experience for you & letting you know how my first time away since becoming ill goes.

L x