For all those that may think my 6 months off is a lark heres a link to a little video. Do you know what it is and it isn’t fun, just like working is and isn’t. This is what most days look like unless I’m off finding a small break in the misery like flying a kite or walking my pup.
Plus I’m broke, on the verge of homelessness and generally a bit of a whinge.
I also carry massive amounts of guilt for not working.
A lot of living with Chronic illness is about learning to say no. This is all well and good, but I can’t help thinking there must be a way to say ‘I can’. To live within boundaries and spoons but still be able to do stuff.
Today I felt the pressure of New Years and the forced fun. I imagined getting dressed and going out, drinking cocktails and staying up till the early hours. Because that’s what you’re supposed to do right? And everyone else is doing it. Or are they? When I woke up this morning I was shaking, my whole being ached and everything was swollen and I knew the plans just wouldn’t happen. So we changed them, the girls are bringing over takeout and then slipping off to celebrate leaving me with a duvet and my pjs. Instead of thinking I’ve missed out I can see that I’m just doing it differently thanks to great friends. It’s OK to think you’ve missed out but check and see if you really have. After speaking to people I realised that so may others are doing the same! Do what makes you happy not what you think you should do.
Earlier on today I went for a walk, went too far, got stuck in a muddy field. and Paul had to pull me out. Again I had gone too far, got frustrated and shed a little tear over what I can’t do. On reflection the good thing was that I was able to walk as far as I did and chat to Paul along the way, laugh at being stuck in the mud and the puppy trying to chase birds. Being outdoors is always so healing whether it is just for a short time. So what if I can’t walk as far or as fast, I can walk and enjoy the outdoors that is what matters. The winter skies, crows cawing and being outdoors makes me happy.
I saw a post earlier that said make a list of what you do every day, then make a list of what you love doing and compare them. I already know that having chronic illness has slowed me down and made me savour the small stuff. When you only have a few spoons spend them on those you love and that list of loved things.
So my New Years Resolutions are not to take things away but to add more in!
Dates with the boy for my heart
10 stretches everyday for my body
A meal plan each week for our budget
Oh and my dream of riding my bike again
Happy New Year all, remember do what makes you happy.
So it got me thinking, as a bed expert, what are the top things you recommend for a bed day? So I asked some of my fellow spoonies, here’s what they said:
Zoe: “Clean PJs, dreadful rom com films (friends call it the heart break hotel collection), colouring in book. Dark days, planning small adventures for the good days! Baking, I find this really therapeutic (not a great combo with steroids!). Crafting, small projects that can be finished easily. Going to a tea shop with good friends and family. Just a small outing to make me feel like I have achieved something with my day, for me that’s important! “
Katie: “An extra duvet as a pillow always makes bed days more enjoyable for me. And keeping an array of boxes of cereal by the bed! Cereal helps everything”
Katie is currently studying for her MA in screen writing, works on and off with us a Wide Eyed Theatre, is a talented poet, and makes costumes. All this and she lives with Lupus plus overlaps.
Helen: “Fave teddy bears. Little book of inspiration / fave quotes. My mini-craft box with ‘easy’ / children’s activities in. Clean snugly blanket. Radio 4 iPlayer tuned to satire”
Helen is a trained Reflexologist and knows all about the art of relaxation and understands chronic pain. This is her page.
Nick: “A onesie, Netflix and a Tardis stress ball usually does the trick. I always try and write as well…. I’ve got a book of writing stimuli and I try and use that to take my mind elsewhere, to varying success. And my cats are very good for those sorts of days – boundless energy that you can’t help but be drawn into!”
Pete: “Giant bean bags are really good for sitting yourself up. Midget gems. Aimlessly browsing Instagram. Usually when I’m having a bad day I can’t really breathe much so good music or good films rather than just staring into middle distance is always good… Apparently a strong coffee is good for my lungs which is as much excuse as I need there (just don’t tell my cardiologist!). Oh yeah, forgot to mention cats are excellent company in the small hours
Cassy: Endless cat memes. Clean duvet/blanket. Whatever food you fancy. Back to back episodes of American crime dramas. The Buddify meditation app. Browsing on Etsy. Bubble baths. Podcasts. Fluffy socks.
And last but not least my spoonie sister Sarie: drawing strange things (when I can), youtube video binging (tutorials and vlogs), A duvet and extra comfy pillows, Clean bed sheets and pyjamas, Cake and tea, Comfort food like beans on toast, Hot water bottles, fresh air if i can get it, Pain killers, doggy hugs, blog writing, friend chatting, listening to woman’s hour or good podcasts, sketchbooking, list writing, cooking good food, heat packs, being surrounded with good objects, not feeling guilty (trying to remind myself of things- again list making is good for this), enjoying small tiny bits and remembering not to compare my self and my achievements/non achievements to others. Remembering that good enough is another persons great. Reading good things (love rainbow rowell & sarra manning books). More pet hugs!