1 weekend, 2 perspectives

Myself & Sian from ME, Myself and M.E thought for our awareness post we would blog about our weekend meet up a few weeks back. Myself & Sian both have M.E, Myalgic Encaphalomyelitis, and are severely affected. We decided to meet up half way which is an hour's travel for both of us. By documenting our weekend & sharing it from both of our perspectives we wanted to show how even though we both have the same illness & the same amount of travelling to do, how differently we experienced the weekend. And to show how varied the symptoms we get are. This blog post is part of Sally's #may12thblogbomb. You can read plenty more awareness posts on her blog sallyjustme.blogspot.co.uk

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Meeting up with spoonie friends is always lovely but it's also always challenging as there is no guarantee we will feel up to it on the day. M.E is very good at ruining plans & messing things up last minute.

Sian & I had arranged to get together & meet up halfway between where we both live. We booked the hotel a few weeks before & although it was more expensive, we chose the option to be able to cancel if we needed. If we had booked the room that couldn't be cancelled, chances are we would have had to & lost our money! I always opt for Premier Inns if possible as they are really good despite being fairly basic. Familiarity always helps with illness I find. I have always had good experience with Premier Inn & the beds are super comfy too.

We booked one night for the Saturday so on the Friday I packed my bag with some stuff & tried to rest as much as possible & again in the morning. We were planning on setting off about 12pm & had planned to have lunch at my uncle & auntie's house as they live 5 minutes from the hotel. We went the usual way but found that the road we take to get on to the motorway was closed, so we had to do a big detour which added on a bit of extra time to the journey. I get so uncomfortable travelling & my back starts hurting really quickly so I try to put something at the bottom of my back for a bit of support. I also feel a bit car sick so it isn't ideal but the car is the easist way of travelling for us. My daughter was really good & was occupied with some activity things so I was able to close my eyes (obviously I wasn't driving!) & put my ear plugs in.

We arrived at my uncles a bit after 1pm & I had intended on resting when we got there but due to arriving later than planned we were starving! So we had lunch & then I went to lay down. However because I had done a fair bit, I was already flagging so resting didn't help much. The best thing to do with M.E is to rest before you feel like you have burnt out but that's not always easy to do.

I had got a text from Sian in the morning saying she wasn't good & was getting some sleep so when I heard from her again while I was resting & she said she still wasn't good, I felt really worried for her & didn't know if she would be able to make it. She messaged me again after a while saying they were going to set off in a bit. Had she not be able to come, I'd of course have been a bit sad about not seeing her but would have totally understood as unpredictability is one of the things about M.E & you get used to it. Luckily though she was on her way!

When we arrived at the hotel it was around 3pm. The staff were really friendly & the receptionist was quite a joker. He had a laugh with my daughter which was quite amusing! I had telephoned a few days earlier to request a room close to the entrance as I always find it easier being near, not that it makes much difference as I still can't really walk. We went to the room & I had a lay down. On the comfiest bed ever! I had hoped I would have a snooze but I didn't. Sleep does not come easily to me.

My husband took my little girl to the park to let her burn off some energy! I was feeling a bit worried about Sian but then an hour or so later I heard my daughter's voice & she came bursting in saying she'd seen Sian! Who she adores. Yay!!

When she got to her room she sent me a message so we went up for hugs! It always feels so relaxed when we meet up. She was with her parents who are also lovely. I had bought presents (& Tunnocks teacakes!) & Sian had brought me my birthday presents so I was allowed to open them early! I was spoilt & my little Miss also got some stuff so it was really nice. Sian showed us how to make barefoot sandals as I really wanted to learn & she is rather skilled at beading! I was relying on my daughter remembering how to do it as my memory isn't the best.

It was suddenlty around 6pm & we thought we better go for some dinner.  There was a TGI Friday next to the hotel so we headed over. It was unexpectedly busy & really noisy. A lot of M.E sufferers experience sensory overload with lights & sounds so it was a bit stressful. We were given a table in the corner so although it was really loud, it didn't seem quite as bad than had we been in the middle. I tried to forget about the noise & focused on the menu!! We had been saying about getting a cocktail during the previous week but in truth if we'd had one we would have regretted it. I developed intolerance to alcohol when my M.E started & I get palpitations after I've had it. Plus it would have gone straight to my head!! Sian's mum did in fact get one though so we posed for a picture with it.

Sian & I decided to share a platter & it was yummy. Until I found a hair in my potato skin! It's a good job I was stuffed on breaded mozarella sticks already. I always seem to find stuff in my food hmmmm.. I did mention it to them as they cleared up our plates & they were lovely. They actually knocked the cost of the platter from the bill!!

I realised how tired I felt & it was also way past my daughter's bedtime. She was starting to act silly so it was time to go. We went back to the room & I plugged in my electric heat pad, which I take everywhere with me now! The plug socket isn't next to the bed though which is a bit annoying but it just about reached. Charging phones is a pain as you can't use it while it is charging & need to get up once it has finished haha. Sian had thought ahead & brought an extension lead so I need to remember for next time.

Finally my daughter went to sleep & I had planned on watching something with Premier Inn's free WiFi but it was so slow that I would have needed to upgrade so I decided to try to sleep instead. Hubby fell asleep too, people who can sleep so easily annoy me!! I went to the loo before bed & the light suddenly went off. So I was stranded in darkness. Fun! Found my way back & took some painkillers (using my phone light as it was now slightly charged!). My ears were ringing loads which I get a lot anyway but it is enhanced when I've had sound overload.

I didn't sleep great & then woke up (early) when I was sleeptalking & my daughter thought I was talking to her so I woke up when I heard her saying "mummy??"! I felt really really poorly with the M.E. I took some painkillers & tried to nod back off but I couldn't. I was extremely fatigued & aching badly everywhere. I got quite upset & felt sick as I felt so rough. I didn't think I would make it to breakfast & told them to go without me. But then after having a cry & taking different painkillers I decided to go as I was starving. Managed to climb into my wheelchair but I felt really spaced out & basically just rubbish.

We got a table & I didn't feel able to get up so they got me some food & a drink. I hate feeling useless but at least I had made it down there. Once the meds kicked in a bit & I had eaten I started feeling slightly better. Only slightly though! I managed to get up for some fruit & then saw Sian had come in so they sat at the table next to us.

Sian hadn't slept much & I could see she didn't look good. We were chatting & then she came over really poorly. She needed to leave & I felt so upset that by us getting together, when she hadn't been good in the first place, it had made her feel so poorly. It wipes us out so much doing the most basic of stuff & I'm not sure if I looked as bad as I felt but to say M.E is an invisible illness, it really isn't that invisible.

We went back to the room so I could lay down & I had a message from Sian saying they were leaving so they came to say goodbye. I rested a little while before we left but I felt so poorly & knowing we had to travel back when I felt so bad was stressing me out. I felt so ill & in so much pain whilst we were in the car & even though it was less than an hour's journey it seemed to take forever.

When we got back I went to bed & I was so cold I had to layer up. My body seems to go into shock a bit when the M.E is so bad but I fell asleep & slept for 2 hours. I felt horrendous when I woke up & I was sweating due to having so many layers on!! I started getting really upset & I find when I get like that, everything becomes massively exaggerated so all the stuff that was on my mind became about a thousand times more of a problem. I had a big rant & had to just stay in bed. I hate it when I feel like that. And knowing I felt like it from doing something so nice & so "normal" to other people makes it really difficult to cope with. However I would rather feel like that as a result of doing something good &  it was definitely worth it.

We were lucky enough enough to be able to get together despite it impacting massively on our health afterwards. But had we felt like we do on our worse days we likely wouldn't have been able to get out of bed in the first place. M.E is one evil illness.

Please see Sian's post here for her version of the weekend.

Ali
 xx