They say it's the little things that count in life and that every little helps. Well in the last year, since my ME started getting worse again, I can definitely say there's been a whole load of little things that have really made a difference. Okay, they haven't magically cured me but they have absolutely helped me cope with the challenges I've faced, kept my spirits up and made me feel like I still matter as a person. So if you know someone who has a chronic illness, be it ME or something else, remember, the little things can make a difference.
Here are just some of the little things that have made a HUGE difference to me and my world, and as always I remind you that my ME is different to how others experience it and I understand that what helps me and what I can do will differ from others. I share my own personal experience.
Recently a colleague suggested that one of the visitor spaces at the front door of my office be allocated to me. I hadn't really thought about it as the car park isn't that big so no space is really that far away but she knew that some days, every step I took was an effort and this was an easy way they could help cut down that effort for me. Every morning I park in it I am grateful that they've kept this space for me.
Food glorious food!
One of the things I've really missed is being able to cook proper meals for myself. It just takes so much effort, the food shopping, the thinking, the actual making...urgh! But a good friend of mine pops round every now and then with a bag of ingredients and makes dinner or brunch for us at mine. If I'm up to it I can help out from the comfy seat at the kitchen table (known by my mum as the supervisor chair). Another friend came to stay for the weekend and also turned up with ingredients for dinner. He also made a big batch of curry and left portions in the freezer for me to have after he had left. How sweet is that! I've also been able to "host" afternoon teas, BBQs and brunches at mine on the understanding that I provide the house and some food but the guests also bring things and/or prepare it. It's actually really lovely being part of it and making things together....it's even nicer when they insist on doing the clear up after!
People are so thoughtful and kind, or at least my lovely friends and family are anyway! I've been sent surprise gifts through the post including a gorgeous fluffy hot water bottle after a friend saw on my Instagram that the one I had was falling to bits. I received a mini hot water bottle from my secret santa as she knew it helped with my pains and the two of them combined are amazing! And talking about water bottles...my folks got me a chilli's water bottle so I can stay hydrated without walking about as much. I take that everywhere now, it's brilliant!
My Aunt and Uncle gave me a craft lap tray (with light!) so that I can craft from my chair or bed if I can't manage to the table or am having pains and need to lie down. They also got me an amazing neck massage gadget thingy and it's sooo relaxing! Friends bought me membership to audible as they know I love books but often am too fatigued or full of brainfog to manage to read. In a similar vein I've received lovely craft books which give me something to do without taking too much effort! Gifts of candles, comfy/daft socks, bottles of Baileys and beautiful nightwear also make me feel cosy, relaxed and calm when I'm stuck on the sofa or in bed. Oh and how could I forget my dancing Groot. By far the weirdest gift I've received and that includes a pair of laughing horse socks but it does make me laugh and they do say laughter is the best medicine!
Friends in my phone
I spend almost all of my time either in my house or at my office (yes, I'm VERY lucky that I can manage to work and I'm so grateful for that), and no offence to my lovely colleagues but it can get a little samey just being in these two places. It can also feel a little lonely and isolating at times, although generally I have to say I enjoy my quiet space at home, it's my sanctuary and I know it's a big part of my recovery. I am pretty active online and have a lot of online friends. Some, I'm happy to say, have become real life friends, others are still friends in my phone but honestly, they make such a difference to how I feel each day. I also have friends who stay quite far away and can't come visit so messenger, whatsapp groups, insta stories, tweets, snapchats etc help me feel connected to the outside world, let me share what's happening in my world and make it possible to keep in touch and feel part of things which is so important to me.
I get to see photos and videos of my gorgeous nephews, chat with my friends in London, Cardiff, New Zealand etc and hear from others with ME about how they are managing. I receive so much support, laughs, connections, knowledge and love through these tools I really think I'd go daft without them!
Maintaining my sanctuary
My wee house is my sanctuary. Luckily before I took ill again I had managed to make a start on redecorating my house and created quite a few relaxing wee nooks which I now take great comfort in. There's my famous yellow chair in my hygge corner, my sitooterie (it's where you "sit oot" in the garden, obvs!), my supervisor chair in the kitchen which makes me feel part of things when others are helping me out and my bedroom which is calm, comforting and relaxing. Every seat in my house is covered with cushions and blankets (seriously, it drives my mother nuts as she can't get on the sofa for cushions!) so I can sit down/relax/nap wherever I please. I have candles and fresh flowers, calming but cheery colours and things I love like books and crochet projects on hand wherever I choose to rest. My mum visits me every Monday evening and helps me keep on top of things in the house, be it dishes, putting the bins out, taking my washing away or changing the bed (that duvet changing malarky is flipping shattering!). I also started using a cleaner which just stops me having to feel stressed about not being able to manage housework AND makes my house a nice place to relax in....worth every penny!
A cuppa and a bite to eat
My colleagues are brilliant at looking out for me and knowing when it's not a good day. Even though they know I very rarely take a cuppa, they know on bad days I do enjoy one but the effort to get to the kitchen and back is just too much. They also know I need to buy my lunch (seriously, it takes that much effort to get myself ready in the morning, there's no way I'm adding in making a packed lunch as well!) and will ask me if I want them to pick me up something or if I want to go with them. They understand that when I can, I want to be able to go myself but that some days a trip to Morrisons or even walking downstairs to pick up something from the sandwhich van is just a bit too much for me. It might not feel like a lot for them but it makes such a huge difference to me!
Making life easier for myself
In the last year I've bought myself a microwave (no, I didn't have one before), a lightweight cordless vacuum and stools for the kitchen and upstairs. These three purchases have been incredible. I can manage to make more meals myself and the tidy up is much easier, I can clean up a little and with the stools I can manage tasks I couldn't have done previously if they required standing for any length of time such as cooking at the hob, hanging washing, drying my hair, putting on make up etc. I've also started getting my food delivered online and have a cleaner. All of this costs money, I know, but for me, I'm still able to work and I can't think of anything better for me to spend my money on than things that will help me get through this challenging time and make my life that little bit easier to cope with.
Working 9(30) to 5(30)
I've tried my hardest but a 9am start and my ME are just not compatible, every morning I stress about trying to get to the office on time and push myself as much as I can but I still end up coming in about ten past (okay maybe quarter past). My bosses understand why and recently they approached me with the suggestion of changing my hours to 9.30-5.30 while I try to get on top of things. It's not something I want to do long term and it's not a permanent change but it does make such a difference. Those extra 30 minutes give me time to get ready in the morning without stressing and there's a lot less traffic when I'm driving which is also helpful.
There's lots more I could mention like the energy-saving miracle that is dry shampoo or my love of podcasts and radio which I can cope with much better than TV some days or my amazing friend who spent her Sunday afternoon today taking me through a restorative yoga session to see if that helps with my pain and fatigue but I just want to finish by saying if you're facing health challenges or know someone who is, just remember, these little things aren't actually that little if they make a difference, whether that difference is removing a challenge, lifting your spirits, reducing your pain or making you feel connected the impact they have is HUGE.
Thanks to everyone who has helped me, I truly appreciate it and it really is making a difference to me.