Going Away - Part 2: The Reality

(I'm sorry I didn't get this posted last week, but I crashed after the weekend & had to get all the rest I could, ready for the appointments & event I've got this week & now to also try & fight off a cold as well.)

Now as much planning & preparing as you do, one thing is certain: You can not control the reality & in my case, how your body will react to the activity & the M.E Flares that are sure to happen. 

Thursday:

The traveling itself actually wasn't too bad.  I had my duvet, a hot water bottle & a hot chocolate with me, because hot chocolate is the next best thing to tea in solving a multitude of problems!  It was really cold, so I ended up dragging out my boots (a decision I would regret come Saturday nights packing stress)

The hotel we were staying was so lovely & we'd informed the staff that I was ill & they were so brilliant! They made sure my room was near the lift (elevator) & because I likely wouldn't be making it down to breakfast (which I didn't, got to save spoons somewhere!) they said my mum could bring my food up to me rather than having to pay room service!


Now as I said though, planning can't control everything & M.E is one of those sneaky evil illnesses that likes to let you think you might just get a few "normal" days but then will hit you & intensify certain symptoms so your "normal" is harder to deal with... Cue Insomnia! (For the entire 3 nights I was away, I was running on very little sleep, but a lot of prayer!)

Friday:

The morning was planned rest time (though I woke before 7am) Waking early had an advantage though, as it meant I could get my medication times on track for getting me through the afternoon.  I took my time getting ready, doing everything slowly, in stages & with rests in between (did the same Saturday)






It was only a short walk to the arena (it was straight across the road) but I had decided to take my crutches with me for two reasons:
1) To help me not use too much energy while walking.
2) They made my illness visible & as such enabled me to sit in an easy place to get too.





I will admit I felt uneasy using them.  I especially wasn't looking forward to seeing anyone I knew (not out of embarrassment, more due to the questions I'd get) Now it's a big place with the numbers of people attending reaching over 10,000 (on Sunday) So you'd think the chances of bumping into anyone I actually knew would have been slim at best! Nope! I saw a number of people I knew everyday! Most just said hello or asked how I was, with me giving my "I'm okay" answer (most of these encounters were simply as we were passing each other, so no stopping) One person I know did ask if I'd damaged my leg again & so I felt like I had to explain a little as to why I was on them, felt a bit awkward to say the least.

One lovely fellow Witness who I didn't know, asked me what I'd done & when I awkwardly said I had M.E, her first reaction was to tell me how amazing I'd done just to be there! I got the sense from that, that she was a very rare person who had some knowledge of the illness & so faded away my awkwardness.

But despite all that, I was so glad I had them, because after being sat for a few hours & taking in a lot of information, I was quite unsteady.  Once back at the hotel, I showered, had room service & then pretty much just flaked out on my bed for another sleepless night...

Saturday:

Another early wake up after very little sleep but again this allowed me to get my medication timings right & gave me plenty of time to get ready & rest.



Again, as planned, I spent the afternoon in the arena... Que Obligatory Convention Selfie or I guess Groupie, that's my mum by the way...



After a wonderful program of a lot of information & note taking, it was back to the hotel to shower, eat & rest. I then began to pack & suddenly realised that now with my unexpected pair of boots (thanks cold British summer!) I'd have to rethink a few things. I managed to get everything back in my case (not as neat or tidy as when I first packed) but after the stress of that, I flaked out on my bed with a bag of skittles & a hot chocolate (these things certainly solve almost as many problems as tea!)

I also managed to FaceTime with a friend, (Thanks free wifi, though you were rubbish when face timing!) which de-stressed me even more. Thank you! Then it was time for even less sleep...

Sunday:

I was still awake with an hour to go before my alarm went off (at 6am) & in true M.E/CFS fashion, once my alarm went off, all I wanted to do was sleep!  But I'd planned to get the full day at the convention this day & despite most of my symptoms now kicking into high gear & demanding attention, I was determined to get my full day!



I wandered over to the arena for 8am & got myself settled in my seat for the day. The program of the convention had been amazing & Sunday was no exception!  I did have to have some moments throughout the day when I had to close my eyes (not sleeping!) just to limit & help with the sensory overload I was experiencing. Doing this helped get me through the day, along with breaks from note taking. 



Although by the end of the day I was feeling pretty unwell (huge massive understatement right there!) & was beginning to crash as we travelled home. It was completely worth it! I was so proud of what I had achieved! It took a lot of prayer & help from my amazing mum but I did it! 

This experience has shown that going away when ill is obviously more difficult, (there's a lot more to think about) but I think it also brings the biggest feelings of achievement & gratitude for simply being wherever you may be or whatever you may be doing. 

Staying in "pacing mode", even if not "full pacing mode" is definitely worth doing as with careful planning, scheduling rests & prioritising events in life, you can achieve what you want. I will say that one thing I found helpful was to be realistic, being aware of my limits helped me to not ignore what my body was telling me & made me stick to my rest plans. Doing so helped me get the most out of the convention. If I'd gone with the idea that I was going to be doing all 3 days, I would have only got through the Friday & then likely been stuck in bed with PEM for the rest of the time.

So despite being ill, I got through it. I had the most amazing time & experienced the best convention I've been too!  I've also seen that even though I'm ill, I can still take part in life, even in a small way right now. My illness is not all that I am, even if it's all some "see" when they look at me.

Overall, I'm incredibly happy with how my first time away went. Yes it was scary & challenging but worth every effort & has given me the confidence to realise that my illness doesn't hold me back & that I'm not letting it either!

Yes ok, I was pretty much in bed from Sunday night until Thursday morning (managed a shower that day!) dealing with PEM. I was surprised that I wasn't in bed longer (just shows my treatment is actually working, HA! To all those not believing it!) & I managed to get downstairs Friday & Saturday!  But it's all been totally worth it & no amount of symptom flares will ever take that away!

There we have it, my first adventure away was a success & I just hope that this has helped all of my fellow M.E Warriors to see that with a realistic view of your limitations, careful planning & pacing, you can hopefully get to that event you want to go to. Obviously I'm not saying or encouraging you to overdo it (I did that Sunday & man it wasn't fun afterwards!) but don't be scared of not thinking you can't do anything at all. I know that's not easy, I still sometimes find that the crashes or flares I'm sure to face (due to the ones I've experienced), can petrify me into thinking I can't or shouldn't do something or go somewhere. 

Anyway, I hope everyone is as well as they can be & resting if need be.

Take care everyone & a huge thank you to all that read my blog, I've been blown away by the numbers recently, especially from the US! So a huge hello to you all across the pond!

Also don't forget if you've something you want to say,then please do comment below & I will reply to you. 

L x