Sunday, 26 April 2015

Milestone #3

It's taken me a while to write this milestone up for various reasons which I'll go into later on in this post. This particular milestone is one that I had been looking forward to for quite some time as it was a major step for me. In the past few years I have only managed to spend time at other people's houses a handful of times. Being in environments I'm not used to puts added pressure on my brain because of the extra energy it takes to process all the new sights, sounds, and smells. This is why I get on much better at home because I'm used to everything around me and so it's easier for my brain to cope, which means my physical symptoms are less severe too. Recently I have managed the odd cup of tea at my in-laws but for the past couple of years I haven't been well enough to have a meal away from the house. This has unfortunately meant me missing out on many family dinners, not to mention meals out at restaurants or even catching up with friends for a coffee, so you can imagine my excitement at my latest goal, which was to go to my in-laws for a family meal on Easter Monday.

I'd been working up to this for a while by going round there for a cup of tea every couple of weeks to refamiliarise myself with all the sensory stimuli of being in their house. I also knew there was a spare room available for me to go and rest in whenever I needed. It felt pretty strange knowing I was going to be leaving the house for a few hours, probably the longest I've been away from it, apart from hospital visits, for a couple of years. I packed a rucksack full of essentials ready for the outing and again it felt strange that I needed to consider taking all these things just to be able to manage leaving the house for several hours. That was my eye mask, my ear defenders, medication, a blanket for warmth, gluten free snacks in case my energy levels dipped too low whilst waiting for the food to be ready. I even took Bunbury, my cuddly rabbit. You might wonder why a fully grown woman needed a stuffed animal but actually Bunbury provides several very useful services. He provides extra warmth when I cuddle him and also there is the comfort of having something familiar and furry to hold onto when I'm resting in a strange place. The main reason I took him however was because he smelt of me, and of my house, and I knew that I needed something to combat the smells of my new environment. Even the smell of a different washing powder on bedsheets has an effect on me so my plan was to lie in bed with Bunbury pushed right up next to my nose so that my brain had familiar smells as well.

Spoonie survival kit.

So to try and cut a long story short, I made it. I managed to sit and eat a delicious Easter meal around a table with six other adults and two small children. Quite a feat of endurance for me actually and the only way I managed it was by spending all the time I wasn't eating in bed resting. Even then it was very hard work on my brain and body. You can see the effect on me here in the photos below - the first taken soon as I arrived. I headed straight for the spare room to rest and as you can see I'm still quite bright eyed and bushy tailed with excitement to be on my adventure. The second photo was taken midway through the meal when I was resting between the main course and the dessert. Then the third photo was taken just after. There's only a total of three hours of time elapsed between the three photos and I think you should be able to see the difference, even though appearance-wise I always look a whole lot better than I feel. Still, despite the obvious toll on my health, I had made it.

Three hours of being out of the house - mainly in bed, resting.

I had hoped because of my careful planning and my resting so much whilst I was out that the payback wouldn't be too severe. Unfortunately that wasn't the case. It hit me quite hard that evening and again for the next two days I was pretty much bedridden. Even though I was elated that having achieved my goal I felt very low that I should have to feel this terrible just to spend a few hours with close family. On top of the payback, I also had a poorly husband to try and look after. He'd managed to pick up a terrible virus and for once looked more ill than I did. It was definitely a case of the blind leading the blind as we tried to look after ourselves as best we could. We pretty much survived on ready meals that week as neither of us was well enough to do anything at all to prepare food. 

By the Thursday I had almost managed to get over my payback and was starting to feel more like my usual levels of energy. I'd also started to feel a bit better about the whole situation, reminding myself that actually there wasn't just the meal on Monday to factor in because the previous week I had the hairdresser round on the Tuesday, as well as my parents visit on the Friday,and a friend visit Saturday evening! It was probably the busiest week I've had in a long, long time. In hindsight I knew I should be really proud of having achieved so much in such a small space of time. Also I realised that I simply wasn't used to sitting up at at table with that many adults. I also wasn't used to being around small children for that length of time. It was the longest I've been out of the house for several years and I had all those new sights, sounds and smells to content with, also my rest room whilst very comfortable was two flights of stairs away from where the meal was. With all my rest stops, my poor little legs unused as they were to such exercise, had actually managed rather an epic amount of stair-climbing. All things considered, it's no wonder the payback was so severe. It's actually a testament to how well I manage my symptoms day to day that I haven't had payback that bad for quite some time. It shows I've got really good at my pacing because when I am at home I'm able to rest and recover exactly whenever I need to. 

Success! A happy Mookpixie with a slap-up feed.

In fact I don't think I've quite realised until now, writing this blog post, just how much I managed to achieve. It's hard when you're in the grip of payback to focus on the positives and it's also been hard for me since then because on the Friday I started coming down with the terrible virus my husband had. Even with all my M.E symptoms and having been ill constantly for the past 3 1/2 years, it's fair to say the past two weeks have been awful. I felt the illest I have felt probably since I first became ill with M.E. I'm pretty much over it now although my sinuses are still very inflamed and I sound like I'm talking down a toilet roll. It's been a tough few weeks however now that I'm over the worst I can see yet another positive to being ill on top of my usual ill. The fact that my body managed to fight off such a horrible virus, in probably around the same amount of time it took my fit and healthy husband, gives me hope. I'm very proud of my little body for coping with it all. At one point I had a high fever which I always take to be a sign of the body's defence system is fighting back so I am glad that my immune system is still able to operate and function semi-normally. And as to achieving my goal of going out for a family meal, I know that the next time won't be so hard and the time after that will be even easier, because my brain and body will get acclimatised to what's involved and slowly but surely, I'll get there. I may be slow but finally I'm heading in the right direction and it feels amazing.

You can sponsor me to raise money for ME research at www.justgiving.com/princessmookpixie


2 comments:

  1. Oh Princess Mook how proud I am of thee. Blogging is actually such a good appreciation tool. Seeing our achievements in black and white is heartening. Some good tips too. Like buiding up your tolerance for places. Maybe that's why me and Ali always go for a Premier inn, we know what we're getting. Also having something that smells of home. And if it's in the form of a snuggly bunny all the better. Xx

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    1. Thank you Siany. Hope you've recovered from your weekend away. xxx

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