Category Archives: Mast Cell Activation Disorder

Weekly roundup

My Aunt &Uncle, their daughter & partner, her son & partner and their 2 children all tested positive for Covid this week despite the fact these three generations don’t live together. My Aunt is 76 and my Uncle 80. In addition, he is very overweight and already has a heart problem. It’s worrying. They both currently only have mild symptoms and so far neither of them feel particularly unwell but they only tested positive on Friday so it’s early days.

The number of Covid cases in the UK is scary. This map is from Public Health England and you can clearly see the number of cases per day now (around 26,000) compared to the height of the first wave of the pandemic in April when it hovered around 5,000.

The good news is the death rate is nowhere near what it was back in May as we have better ways of treating severe Covid infections. The bad news is we are seeing increasing numbers of Long Covid patients whose lives are being dramatically affected by continuing symptoms after contracting the virus. Personally I’m just continuing to self isolate (aside from seeing my parents, who are also self isolating), being religious about disinfecting my hands after I’ve handled the post, washing all my groceries with soapy water and social distancing whenever I have to come into contact with anyone 🙁.

Monday I felt absolutely dreadful. Very MEish and unwell. I hadn’t done anything to cause a flare in my symptoms so was worried and confused as to why I was feeling so crap……………………and then Aunt Flo arrived, which solved the mystery. There is no need to still be having regular periods at the age of 53. Zero fucking needy-ness.

Wednesday I had to take my Dad to Hexham for a pre-op assessment in relation to his upcoming hip replacement and we both enjoyed having a ride out. His appointment took 95 minutes but he had to go in alone, so I sat in the car with my flask and butties and practised a talk I’m giving this week. I didn’t get any strange looks as I demonstrated the length of my 9″ studio bulbs and animatedly talked to myself. The men in white coats did knock on the window though and ask me to step outside 😆.

My dog Bertie has had a herniated disc in his spine for years and occasionally has flare ups where he’s in considerable pain. I took him to the groomers on Friday to be clipped, who knows all about his issues and promised to be careful, but by teatime he was obviously in agony. Luckily I have agreed a pain management plan with his Vet so was able to increase his Gabapentin medication and give him a Tramadol, which eventually enabled him to sleep. These episodes are happening more and more as he gets older though which I guess is to be expected but is no less distressing.

Friday evening I’d arranged to have a Zoom cuppa with 2 friends from my old camera club. I’m loving Zoom. It means I can have a social life with none of the cost to my energy levels which physically meeting in person entails. Oh how I wish it had been available when I was isolated and bedridden for all those years.

This morning I’ve woken with a migraine. I woke with a migraine yesterday morning too and have had period pain since Monday despite the fact my actual period only lasted 24 hours. Endometriosis is the gift which keeps on giving.

I’m off now to have some infant Ibuprofen suspension and my breakfast in the hope it will subdue my stabbing head pain. The clocks went back an hour last night which meant I was up at 5.15am as Bertie didn’t get the end-of-British-summer-time-memo, so it’s looking like a long week while I try to wrestle both our body clocks into submission.

Be vigilant my friends and stay safe x

Weekly roundup

I can’t believe it’s Sunday again already – I feel like I’ve achieved diddly squat this week. I’ve had 3 bad migraine days, 3 disturbed nights due to hip pain and my energy levels have been super low, consequently I seem to’ve spent a lot of my time in bed being as bored as a bored person on a boring train to Boredsville.

I discovered this week that 2 of my friends are suffering from Long Covid, once since he had a mild Covid infection in March. Most people who develop M.E. (though not all) do so following a viral infection of some kind and the similarities between Long Covid and M.E. are striking. In fact, some people who were infected with Covid in March have now reached the 6 month threshold for a diagnosis of M.E. and some doctors are calling these patients Long Covid M.E.

The difference between how myself and my friends were treated as M.E. patients, and the way Long Covid patients are being treated, however is staggering. I had very severe M.E. symptoms, including seizures, paralysis, loss of speech and had obvious neurological defects like a loping gait yet it took 2 years for me to be offered an MRI scan and I was treated with huge derision while in hospital for that, while my friend who’s only had mild symptoms since March has already had both an MRI scan and a CT scan and is being regularly monitored by his doctor. It’s hard not to feel angry, but my hope is that the attention being given to Long Covid patients will benefit people with M.E. in the long run.

I had to take my Mum to see her GP on Friday. Her ankles had been swelling badly, so she had been advised to increase her existing water tablet but this caused her kidney function to decline alarmingly, so she had to have it re-tested . Plus she had a large lump under her arm with some kind of icky crust on it and the GP needed to examine that in person. It turned out just to be a massive comedone which the doctor was able to squeeze to her great delight 😆.

Bertie’s recent severe back pain seems to finally be settling and I’ve been able to reduce his gabapentin from 3 per day back down to his usual 1. I think the drug was making him sleepy because he’s been super perky since the dose was reduced – it’s great that he’s still so lively at the ripe old age of 12.

The nicest part of my week was meeting my bestie for a car picnic. Although she is really strict about self-isolating her partner goes out to work, so we are aware there is a risk he could unknowingly bring home the virus and we avoid meeting up in each other’s houses. We pulled up in a lay-by near some woods and chatted to each other through open windows while munching on butties and drinking tea from a flask, which was a bit cold and uncomfortable but still lovely 🙂.

Well gorgeous people I desperately need to pee (I know, TMI!) then am off to put the grill on for some toast, which will no doubt be the highlight of an otherwise very boring day as my energy is still on holiday, no doubt sipping cocktails on a beach in the Bahamas the jammy git! Until next week, stay safe x

Weekly roundup

We have had brilliant, if slightly scary, news this week. Three years ago, my Dad started having difficulty walking and to cut a stupidly long and complicated story short it turned out he needed a double hip replacement (in addition to having spinal stenosis and suspected Sjogren’s Syndrome). He had his right hip replaced last November and was due to be admitted to hospital in April this year for his left, but of course lockdown happened so the surgery was cancelled.

The poor fella can hardly hobble, so we were all thrilled when this week the hospital rang to say he is booked in for his second op at the end of October. But I’d be lying if I said I wasn’t also scared. He’s having it done in the North East, an area with one of the highest rates of Covid in the country (an estimated 1 in 250 people are currently infected and the numbers are rising rapidly), so obviously we’re terrified of him catching the virus while in hospital. But on the other hand we’re all praying he has the op before a total local lockdown is announced and it gets cancelled again.

Despite my Dad’s imminent surgery and 2 month recovery process, Christmas looming on the horizon and the fact we’re in the midst of a second wave of killer Covid, my Mum in her wisdom has decided to have three rooms in her apartment decorated and a new carpet fitted in her bedroom. So various tradesmen are now traipsing through the house. I’ve tried to tell her it’s insanity, my brother’s tried to tell her its insanity, but she says “it needs doing” so it’s getting done. No fucker is going to be visiting the house for months because of the risk of passing on the virus to my Dad, so why the hell it can’t wait until spring is beyond me 🤨.

On a personal note, I’ve had a very exciting week. I’m not spilling the beans at this stage as it’s early days, but I’ll just put the word Owl out there and you can draw your own conclusions!

My right arm is also finally much better, though still sore if I use it for any length of time. It’s been really painful for 5 months and I tried everything to try to get it to settle down (pain gels, taping, bracing, trigger points, massage, ice packs) but nothing worked, so I eventually decided to simply rest it in a sling for a month which seems to have done the trick 🙂. Now if only I could get my sodding left hip to sort itself out I’d be a happy bunny!

Until next week my friends, stay safe x

Weekly roundup

The poltergeist has struck again. I decided a few months ago to rest my right arm in a sling to try to cure my elbow pain as nothing else had worked. I had a cloth sling in my first aid box, and while I waited for a better sling to arrive from Amazon I used that. But so that my arm was totally still I wrapped a bandage around my torso to keep the sling in place. When my nice, new, much more comfortable sling arrived I dumped the old sling and bandage on the chair in my bedroom and promptly forgot about it under a pile of books. That was 3 weeks ago. Friday morning I woke to find the bandage on my bed. It wasn’t there the night before when I went to sleep………….


After having no working downstairs loo for 3 weeks as there was a leak from the isolation valve, I finally found a plumber who would come and fix it. While she was here (yes, my plumber was a girl yay!) I also got her to install the new kitchen sink and tap I’d had sitting in my lounge for 3 months. Trying to get tradesmen to do small jobs like this is nigh on impossible but she made a great job, even if she was expensive. The house needs all sorts doing to it, like the exterior painted and a re-wire, but as I’m planning to move I’m only doing jobs which will make the house look prettier in order to sell.

My Mum’s drinking has been totally out of control this week. I went there at 10.30am on Thursday and she was already drunk 😕. What’s more, she’s been nasty and argumentative with it and she told me to “shut the fuck up” even though I’d driven 14 miles to help my Dad despite having a migraine. Lockdown, when she physically couldn’t leave the house, was lovely. She was back to the Mum I’ve known and loved all my life but now she is sneaking out to the supermarket every week it’s all turned to shit. It didn’t help that my niece bought my Dad a humongous bottle of whiskey, my Mum’s favourite tipple, for his birthday in August which I think was the starting point to her current fall off the wagon. It just makes me so sad.

My eldest cousin said she’d had a phone call off our other cousin who lives down south, to ask if my Mum was OK (why she hadn’t rung me I don’t know). Turns out, my Uncle had rung my Mum recently and she’d been really weird on the phone and passed the receiver to my Dad mid-sentence. She will have been drunk of course but as her drinking is a secret which only me, my Dad, my bestie and my eldest cousin know about she couldn’t tell our other cousin why my Mum was acting strangely.

I try to feel compassion for my Mum but it’s hard. The relationship we have with our parents is so fundamental it’s not something you can brush off or ignore like you can with most other people. I’d be lying if I said that it didn’t affect me on a deep, deep level, despite my best efforts to just be accepting. And it’s particularly difficult when I do everything in my power to help and care for her, despite my own health issues and lack of care, yet receive abuse or dismissal.

We are firmly in the grips of a second coronavirus wave here in the UK, especially in the north where I live. Despite having more daily cases than we ever did at the start of the pandemic in March, people seem to be disregarding social distancing and not being in any way extra careful. My parents are allowing my brother and sister-in-law into their apartment, despite the fact they both go out to work and mix with other households, and my niece was there yesterday despite the fact she is a police officer and in close contact with idiot members of society. My parents seem to think that as they’ve survived the pandemic so far they are invincible, so I must have a word with my brother and niece instead and tell them not to visit. Why the hell can’t they use their own common sense though?! I’m fed up of playing the role of Parent – if I’d wanted children I would have fucking well had my own.

Today I must try and do some cooking as my freezer is bare. I hate cooking and find it sooooo painful, so I batch make meals and freeze them. When I win the lotto jackpot the first thing I will do is employ a cook!

Until next week, stay safe all x

Weekly roundup

I’m bone weary and it’s only 7.30am, but for once it’s a good weary. The award ceremony for the humongous photography prize I won took place via Zoom yesterday, however just because an event is wonderful doesn’t make it any the less energy-robbing. Intense emotions, be they good or bad, are simply and utterly knackering.

I am currently drowning in paperwork. Again. I get on top of it only for more letters to arrive through the door – I swear there’s a fucking letterbox Fairy with insomnia in this house, who has nothing better to do all night than multiply my paperwork. The bitch has to die.

Speaking of things which go bump in the night, my resident poltergeist is at it again. I keep a couple of bits of paper stuck to my fridge with magnets – they contain a list of things I need to remember when I go off taking photographs, and instructions for cooking meals I’ve made from frozen. Just about every day for the past 2 weeks, when I’ve come downstairs in the morning one of the bits of paper has been on the worktop. Weird, but maybe the magnet which holds it up is somehow faulty (can magnets loose their magnetism?!) even though it never, ever drops off during the day. To test the theory, I swapped the magnets over so that the one which keeps dropping off is now holding the other bit of paper up. But it didn’t help. When I came downstairs on Friday morning the bit of paper with the new magnet on was on the worktop 😮. And look at how the magnet is positioned. If it had fallen off, the paper would be face down with the magnet underneath it! But it is face up, with the magnet upside down on top!!


I used to think the poltergeist was just old energy living alongside me in the house, until the night the de-fluffer I keep in my dressing table drawer went off at 3am which I wrote about here. It obviously woke me and I had to hunt to find out where the noise was coming from and turn it off. I didn’t know it then, but I had bedbugs which I’d unknowingly brought home in my suitcase when I stayed in London for my exhibition and they are most active between 2am and 4am. I now am convinced this was the poltergeist’s way of waking me to find the bugs, because after this I woke at 3am for days eventually discovering said bugs which I was able (at huge cost) to eradicate.

I’ve no idea what the poltergiest is trying to tell me with this bit of paper in the kitchen. Possibly nothing and it’s just reminding me it’s here, or possibly something which I am not yet privvy to – I’ll keep you posted.

I celebrated my birthday this month. I used to buy birthday and Christmas presents for half of Cumbria and the effort, not to mention cost, used to cripple me. I was on my knees for months financially just to buy gifts for people I never saw and who earned twice, sometimes four times, as much as me so several years ago I called a halt and now only buy presents for my parents and best mate. Consequently, it means I don’t receive many gifts so instead on my birthday and for Christmas I now treat myself to something nice.

This year, I bought a wall plaque. I’m not one for ornaments really, so the things I do have in my home are meaningful to me. I try my very best to live my life with integrity, even though at times it’s monumentally difficult especially when so many other people are out for themselves, stomping all over others to get what they want – you only have to think of the panic buying during the pandemic as a case in point. You’re aware that by living with integrity you may not be at the top of the pack, but at least I can sleep at night with a clear heart and conscience. I don’t always manage to do what’s right, but faced every day with this message I hope I’ll think twice if I’m tempted to act in ways which are detrimental to my higher purpose.

Until next week my friends, stay safe! x

Weekly roundup

Our Prime Minister this weekend is apparently deciding whether the UK should have another national lockdown. There’s no way he’ll sanction that (we can’t afford it) but I’m fairly sure come Monday new restrictions will be in place due to the fact that rates of Covid infection are now doubling every 7 days. Whether anyone will actually follow the new rules is anyone’s guess. Due to the nice weather, the Lake District this weekend was absolutely heaving with people, few of whom were social distancing. FFS will they never learn?!

I had a fantastic day on Tuesday. A photo buddy and I visited a local wildlife centre to photograph birds of prey. They aren’t imprisoned in tiny cages, which I wouldn’t condone, but are kept as part of a breeding and conservation programme and are allowed to fly freely at certain times of the day (at least as freely as any captive bird can with trackers sewn into their feathers).

Fabulous as it was, it did take up all my energy for a good 3 days and I was just getting my mojo back when I had to take my Mum to urgent care on Friday which robbed me of yet more energy. Consequently I haven’t done much else all week other than try to survive. My day out was worth it but and when I spoke to my Mum yesterday she said her arm was much more comfortable and less painful 😊. My bedroom, where I spend most of my time, is a shit tip though and I really need to find some umpf from somewhere today to tidy up and my parents’ energy deal is coming to an end soon so I need to get my fuzzy noggin in gear to switch them to a cheaper provider.

I’m flummoxed as to what is going on with the online gallery I signed up to. In the past month 52 people have added my photos to their cart, yet I’ve not had a single sale. I have the equivalent of a business degree, so know that cart abandonment is usually around 65-70% but 100% is weird to say the least. I’m also questioning the site’s search function for buyers. When I add a new picture, then search for it using “newest” as the search function it’s nowhere to be seen, yet images added 2 months ago appear on the first page of the search. You don’t want to start whining when you’ve just joined a gallery, but OTOH if I don’t look out for my interests who will? I’m unsure whether to contact them or leave it a bit longer.

Well, this was a fun and interesting post wasn’t it?! 😁. Is it just me who finds their personality does a bunk when they’re really tired? There are zombies with more pzaz than I’ve possessed this week!

Weekly roundup

I turned 53 this week, and the plan was for my parents to put up a little picnic and for us to go for a drive in the car at lunchtime, stop somewhere pretty and eat it (we’d normally go to my favourite restaurant for lunch, but have knocked that on the head due to the rise in UK cases of Covid). But you know what they say about the best laid plans of mice & men………..yup, they oft go awry.

At 2am Tuesday morning I woke to find Bertie pitter pattering around the bedroom. I’d forgotten to close his doggie gate, so I said firmly “bed!” but he stood there looking forlorn, head down, ears back and I realized that something was wrong. He’s had a severely herniated disc in his lower spine for years, but it doesn’t affect his movement and any associated pain is controlled by daily paracetomol and Gabapentin prescribed by his Vet. Very occasionally, though, it seems to get suddenly worse and I realized he was walking about because he was in too much pain to sit or lie.

I got up and gave him an extra Gabapentin and another dose of paracetomol. This is my agreed plan with the Vet when he has these acute episodes. I then put him on my bed and stroked and rubbed his back to try to soothe him off to sleep. It didn’t work and it broke my heart to see him in so much pain 😥.

His last really bad attack was in 2018. That time, he was given a week’s course of Tramadol to take which really helped and I had a few tablets left over. In my 3.15am stupor and without my glasses I couldn’t read the ‘use by’ date on the bottle, but I gave him one anyway. I then got him settled in his own bed and stroked him until he started to relax. At 4am I got back into my own bed and, although he woke again at 6.30am, we both nodded back off until 7.30am.

But he was obviously still in a lot of pain and could barely sit or lie down. So I gave him another gabapentin and some more paracetomol at breakfast. My dog walker came at 9am as usual and took him on a very short, gentle walk during which time she said he was totally fine and acting normally, which is a brilliant sign because if the disc slips any further it could paralyse him. It’s only when he tried to sit or lie down that the pain seemed to really bother him.

At 11am I gave him another Tramadol and waited for the Vet to call me with a plan. This was to max out his pain relief for a week in the hopes we could get the problem to settle down. So he’s now on gabapentin+paracetomol at breakfast, gabapentin at lunch, paracetomol at 4pm, gabapentin at 8pm, then tramadol at 10pm. It’s a good job my phone has reminders is all I’m going to say 😁. It’s working well, and although he’s still not back to his usual self he can at least get comfortable enough to sleep.

However, there was no way he could cope with being jolted around in the car so my birthday picnic had to be abandoned and we just had lunch at my parents’ house instead. The house we’ve all been basically stuck in since March. Such is life in 2020.

To add insult to injury, the day before my birthday Aunt Flo arrived. She’d been awol for 72 days but like the proverbial bad penny she keeps rocking up with suitcase in hand. Did it have to be on my birthday though? Really?! I started my periods at the age of 11. That’s 42 years of four weekly torture due to severe endometriosis and adenomyosis. Enough all-fucking-ready.

Speaking of torture, I’ve been awake half the night with pelvic pain. I’m going to have to bite the bullet and contact my GP about my current pain issues as nothing I’m doing is helping, and having had this flare involving both my pelvis and right arm for nearly a year now I think I need professional help. It’s pointless being referred to my local physio team, though, as they are clueless about hEDS so I’ll ask for a referral to the city hospital as I know they have a couple of physios with special training in hypermobility disorders.

It’s fair to say this week hasn’t been without stress, but I still managed to have a lovely actual birthday. My parents did their best to make the day special for me and I had lots of lovely messages from friends and family 😊. If you’d told me last birthday that this year we’d be in the midst of a global killer pandemic, with lockdowns and “social distancing”, fights in supermarket aisles over bog roll or the last packet of pasta shapes I would have thought you’d been eating too many magic mushrooms, yet I’ve survived (so far) and that’s all the gift anyone could wish for.

To end, I just want to send my love to any of my readers affected by the horrific fires on the American west coast. I can’t imagine what you are going through and I pray you stay safe and well x

Weekly roundup

I had a lovely meet up with my bestie yesterday. She is the only person I ever get to have an intelligent, emotionally astute conversation with and it’s so replenishing to my soul. You know you have the right person in your life when you don’t have to play a role with them – you can just be you.

I was quite tired though. At 3am the night before, something had woken me. I realized it was a yelp from Bertie. He sometimes barks in his sleep, so I put the lamp on low and looked over at his bed expecting him to be sound as a pound and dreaming, but he was sat upright with his left front paw up in the air 🙁. So I go over and inspect said paw, which doesn’t seem swollen or anything, but he won’t bare any weight on it. I was shattered and there was nothing I could do until morning anyway, so I pick him up and put him in my bed, stroking and cuddling him until he finally lay down and went to sleep. I, OTOH, didn’t drop back off until after 4.30am. At 5.50am, Bert was awake as usual. He gets up, right as rain, and poddles off downstairs for his breakfast. No sign of a limp, pain, nor anything else. Which is brilliant, obviously, but I still have no fucking clue what the 3am palaver was all about!

Schools went back on Weds for the first time since the start of March, so while they still had nothing much to do I nabbed my friend’s two daughters for a quick photo shoot. It’s taken a lot of work, but I’m happy with one of the resulting images I’m calling ‘Life Behind Bars’. I think it’s barbaric that anyone would ever keep a bird in a cage (I feel the same way about crating dogs unless there is some kind of medical need), but then the way we treat animals in general (horse riding, meat production, hunting) hurts my soul and is the main reason I haven’t eaten meat for over a quarter of a century. To quote Maya Angelou “when you know better, you do better”.

Time for breakfast, then I’m off to do jobs for my parents. I usually go on a Monday, but tomorrow I’m having to stay in to wait for delivery of a new tumble dryer. The old one still works, but being as though I got it second hand in 1989 I’m not sure for how much longer, so thought I’d get a new one while the going is good. I can guarantee, however, that the new one won’t last 30 years – these days you’re lucky if something lasts 5. They don’t make stuff like they used to, a deliberate ploy no doubt to keep you buying unnecessary shit!

Weekly roundup

Since lockdown restrictions ended in June it feels as if the pandemic is over, masks aside, and as the cases where I live are now low we are all fairly complacent about the situation.  I can’t even remember the last time I talked to someone about Covid, which shows how not on our minds it is and social distancing seems to have been largely abandoned.

However, experts continually warn of a second wave.  The weather has definitely turned, it’s noticeably wet and cold, and as we dive into Autumn everyone is going to be stuck indoors together.  Children are finally back at school full time this week after being off since March and, while infection control measures are in place, kids are notoriously bad at following the rules.  My sister in law is a teaching aid and had only been back in the classroom for 3 days in the summer with a restricted number of students before she caught a cold.  And if you can catch a cold, you can catch the much more infectious Covid-19.

My niece is a police officer and she had to be tested for Covid this week after displaying symptoms.  Turned out to also just be a cold but who knows about the next time?

My parents’ behaviour worries me sick.  My Mum is at the highest possible risk of death from Covid infection, yet she and my Dad went to a packed supermarket this week because “it’s something to do” and both have long since abandoned washing their hands the second they get back home.  They also allow everyone and his dog into their home including my police officer niece who is working up close and personal with members of the public and has managed to infect herself with a cold virus, and Tesco delivery men who are visiting hundreds of other homes every day.  WT-actual-F?

I’m still largely staying home and avoiding contact with people like the plague and have no intention of altering my behaviour any time soon.

On to other topics.  My downstairs toilet is leaking where the water inlet pipe meets the cistern.  It shouldn’t have been difficult to fix.   There’s an isolation screw on the inlet pipe which you can turn to shut off the water supply, which allows you to fix any issues.  Only mine doesn’t work.  Of course it doesn’t.  So now I’ve got to shut the water off at the stop cock.  Only my stop cock is old and prone to leaking, so I avoid touching it.  I’ll no doubt fix the toilet leak and end up with a much worse stop cock leak and have to get the plumber out.  FFS.  I need my new house to come along soon because living in a 300 year old cottage sounds romantic but is just a goddamn pain-in-the-arse money pit.

I checked my new online gallery this week and was highly excited to see that my photographs had been added to six different people’s carts 😮.  So I waited to get the email telling me I’d made my first sale…………….and it never came.  According to Google, up to 70% of all add-to-carts are abandoned before checkout.  Er, WTH?  I mean, I’ve occasionally put small items in my Amazon basket and then changed my mind or got them locally instead, but would I be doing that with a piece of art worth over £1000 it’s taken me ages to choose?!  So to all those people who add stuff to their online shopping baskets with no sodding intention of buying anything, spare a thought for the person selling and whose hopes you’re raising then dashing and use your Favourites or Wish List instead.

My stomach is rumbling so it must be time for breakfast.  I am currently as fat as a whale and am trying really hard to ‘be good’.  I spent the gross domestic product of a small nation on organic fruit this week at Tesco and only allowed one teensy tiny bag of Haribo Gold Bears into my basket (I need them for those days where a peach or a pear just doesn’t cut it 😉).  Why is it so easy to gain weight and so fucking difficult to lose it – answers on a post card please.

 

 

Limits

I don’t look sick.  At least, not after I’ve put a blob of blusher on my pasty white cheeks, and concealed the purple circles under my eyes which make me look like a heroin addict, and if I don’t use my crutches, or my Oval 8s, or my mobility scooter and my arm isn’t in a sling (the 2 other braces I never leave home without, and the TENS machine which keeps my back pain manageable, are mostly hidden under clothing).  And because I don’t look sick, I’m treated like I’m healthy.  Obviously.

Even people who know I’m sick treat me like I’m healthy.  I’m not quite sure why that should be.  Maybe they just forget? (I wish I could!).  Or maybe they’re not aware of just how sick I actually am.  Or maybe they’re in denial.  Who knows.   But because everyone and his dog “forgets” or doesn’t know I am sick, there’s a LOT of pressure to be healthy.  Which I’m not.  Obviously.

Mentally, I am as motivated to do stuff as I was before I got sick.  Combine my eagerness to do stuff and the continual pressure from other people to do stuff and it is massively tempting to do stuff I shouldn’t.

I drove past a little wood near my house the other day.  It’s full of heather which is currently in full bloom and looks spectacular.  “That would make a fabulous backdrop for a photo” I thought to myself.  So today, with dog in tow, camera slung over my shoulder and my arm still in a sling I toddled myself off to said wood to take a couple of photos.  It’s about a 10 minute walk from the car park, on the flat.  Do-able on a good day and today wasn’t a bad day.   I got to where I needed to be, tied the dog to a tree so he didn’t wander off and took my pictures.  Halfway through I literally felt my energy draining out of my feet and I started to feel queasy and light-headed.  I mentally stamped my foot in frustration.

By the time I’d finished taking my pictures and walked the 10 minutes back to the car I felt like death warmed up.  I had lost all colour in my face, wanted to throw up and was so foggy-headed I can’t even remember the 4 minute drive home.  I had to immediately lie down and even though that was three hours ago I still feel like shit.  My head is thumping, I’m struggling to think straight, I’m dizzy, my hips are killing me and I feel properly queasy.

I really enjoy public speaking and I think it’s something I’m fairly good at.  Consequently, I am constantly asked by various camera clubs to give talks and demonstrations which would earn me some much needed cash.  There’s nothing I’d like more, but I turn down virtually every request because I realistically know that it’s all too much.

My photography friends are constantly asking if I’ve entered this competition, or that competition and simply can’t understand when I say “no”.   Two people at my new club have asked if I’ll mentor them, and I’ve had to say “no” (so hard to do when you’re trying to fit in and make new friends 🙁).

Now I’m selling some of my pictures, there is a lot of expectation that I will be churning out new work at least once a month.  And while that would be do-able if I were healthy, it absolutely is not do-able because I’m sick.  I can only take pictures, and edit them, on a ‘good’ day (and I use the term relatively) and then only for very short amounts of time.  And if I’ve used my energy for the day doing photography I don’t have any left for other things, like bathing or cooking or laundry or doing my Tesco shopping.  Consequently, it can take months to produce just one photo.  I was working on a new image last week and didn’t even have a wash, let alone a shower, for 3 days and lived on oven chips and bananas.

You have to possess super-human emotional strength when you are sick.  The strength to ignore other people’s expectations, the strength to resist the pressure to join in with healthy activities and the willpower to fight your own desire to want to do more than you know you’re capable of.  It’s a lot, and even after 25 years of illness I still give in more times than is good for me.

It’ll take me a couple of days to get over today’s little photography outing and during my recovery nothing will get done.  I won’t eat properly, dirty dishes will pile up on the kitchen worktops, I still won’t get my shower, and the laundry in a heap on my bedroom floor waiting to go in the machine will no doubt still be there on Saturday.  Was it worth it?  Depends on whether I end up with an award-winning photo or not 😁!

It’s a fine balancing act.  Despite my illnesses I still have to have a life, otherwise what’s the point?  But I’ve been sick long enough to know my limitations and even though I do cross the line now and again it’s not something I make a habit of – the consequences simply aren’t worth it.  Even after all this time, however, I do still struggle with other people’s expectations of me.  After a couple of decades it’s wearing on my soul to keep saying “I’d love to, but I can’t” and to watch everyone go off and have fun and be left at home alone for the six millionth time.  I’m sure most people just think I’m massively anti-social – even though they know I’m sick it doesn’t seem to compute that this would limit my life in any way!

It’s tough to have to constantly police your own activities and reminds me (as if I need reminding) of how strong we all are.  Every second of every day.  Yet we receive no recognition for the war we fight or the sacrifices that we make.  Quite the opposite.