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.
I went shopping for cheese at our local farm shop and the queue was around the building. It’s a funny place to shop, great produce, but the clientele all believe they are royalty and think nothing of taking a limb off with their trolley if you’re in the way of their sourdough.To go there on the week before Christmas I must have been mad.
On the way in I found a basket (thought about the agony of carrying it) and headed to the cheese counter. I stood for ages waiting politely and being ignored. I could feel my knees shaking and my lower back begin to protest. I put down the basket and leant on the cool glass for support. How do you tell people you cannot stand for long and that you are hoping that rumble in your tummy isn’t IBS? Just keep smiling. After eventually grabbing the attention of an assistant myself and the lovely lady next to me were told that despite waiting 20 minutes we’d have to join the queue they had started at the other end of the counter. All along they’d been serving at random, theres never a queue there and no sign. Me and my now partner protested. Why hadn’t they told us this 20 minutes ago? I got served, with the coldest, rudest service ever. ‘don’t worry’, said the lady next to me ‘that ones always got an edge’ she meant the assistant not the pungent cheese.
So cheese in basket I turned to join the queue that snaked around the entire building, my heart sank. People were being crafty and joining the queue as soon as they entered the shop, leaving one person waiting and one person whizzing around collecting items. I was on my own. I considered asking the nice lady at the checkouts if I could sit on the floor with my basket and wait the same as everyone else. By now my hands were shaking noticeably, which makes me look like I need a drink a bit too much. The thought of explaining was just too much. If only we had a blue badge on our person to explain that we cannot stand for long periods or may have to leave urgently. I don’t mind waiting my turn but I cannot stand up!
So I put on my best smile and made friends with the people in the queue. The family in front were adorable and straight out of a post from ‘overheard in Waitrose’. ‘Please mummy, may I have the Panettone?’ We all giggled as they compared it to Morrisons. My faves though were the family who had been beside me at the cheese counter. The gentleman wore a sporting navy bow tie and the woman loved my basket technique of put it on the floor and move it with your feet. In fact I started a trend and soon the whole queue was doing it!
Typical that things start to flare just before Christmas, and I’ve been so careful. Today the banging headache has arrived. My neck is crunchy and out of line and I’ve had 4 weeks of tummy pains and IBS.
Off to the doctors now but thought I’d look up some tips, then the laptop killed my eyes. See you on the other side…
Tonight I put on my party face and feet and lasted almost 2 hours before the tummy aches I’ve been getting returned. I hate the fact the illness rules my life and destroys relationships.
One big feel sorry for my self. I’m scared I can’t eat Christmas dinner because everytime I eat I’m in so much pain.
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:
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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.
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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.
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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.
Cassy is a creative blogger and her blog provides an excellent distraction on bed days. You can read her blog here. Or follow Cassy on Instagram. She’s a busy bee and a super fighter of chronic illness.
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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!
Sarie lives in Barcelona where she is an illustrator and designer. Her webpage is here
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So the top 5 bed day essentials seem to be…
Clean, fresh comfy duvets with lots of snuggling potential
Snacks that are good for you and easily on hand
Distracting your brain whether it be through movies, books or activities or keeping creative with crafts, baking and writing, whatever you can manage.
Treating yourself. If that means a nice cup of tea and some chocolate or a super bubbly bath. Guilt free as you need it
Pets and fellow Spoonies: for hugs, moans, advice and to listen
Thanks to all my lovely, talented and courageous friends.
Please leave a comment if you have further suggestions.
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