Tag Archives: living with chronic illness

Weekly roundup

Y’know those times when the stars are aligned, everything is seamless and effortless and life is as smooth as a glassy lake?   Yeah, this week has not been one of those times.  If something could go wrong it has, just to fucking spite me.  Get a brew and a KitKat, this is a mammoth post 😉

I have the most important few days of the year coming up.  I am having 10 of my images exhibited in a funky, well-known gallery right in the heart of London.  I know, 😮 and double 😮  I have spent 2 months getting the pictures perfect, printed and mounted and needed to get them framed ready to ship off to the Big Smoke.  I already own 5 lovely black frames so went on Amazon to order another 5 to match, only I needed a different size and Amazon didn’t stock them.  No worries though, I found a marketplace seller on Amazon who did.  Amazon usually dispatch within 48 hours, but I waited and waited for the frames to arrive getting more panicky by the day and eventually after nearly 2 weeks they appeared…………and were fakes and nothing like the frames I needed.  FFS.  So then I had to contact the original frame manufacturer directly and get them fast shipped, which cost £45 more than it would if I’d bought them on Amazon.

I, of course, then needed to send the fake frames back.  Gets them all packaged up and in the car to drop off at a Collect+ store…………….and their computers were down and they had no clue when they would be fixed so they couldn’t send them.  FFS.  Again.  So I had to do a 20 mile round trip to the nearest other drop off point – I should request an hour of my time plus petrol money be added to my refund.

My friend has just moved house so I thought he was bound to have a strong cardboard box large enough to fit my 10 exhibition prints for shipping.  Nope, that would have been far too easy.  So I spent 2 hours on Google trying to find something suitable, which wasn’t so large I’d have to remortgage my house to send it, with no joy ;-(  However, I eventually discovered a cardboard box making company literally 10 miles from my house and they custom-made me a perfect sized box within two hours of me contacting them, which was the most expensive cardboard box ever made but at this stage I would have sold a kidney for a suitable packing crate.

Spent ages getting my pictures labelled, title cards printed and bubble wrapped everything to within an inch of its life.  I could then weigh my box (14kg) and arrange a courier to deliver – this was on Wednesday and the package had to be in London on Monday!   It had to be a timed delivery slot, though, because obviously the organizers don’t actually live at the Gallery.   DHL quoted me £77 – are they having a fucking laugh?!  The sodding box has to be returned too, so the cost would be doubled.  I literally had palpitations wondering how on earth I was going to get my pictures to The City on time.  However, fate struck once again when I remembered the box-making chap telling me he used Hart Distribution, so I contacted them and they quoted me £22.50 which included £150 insurance and guaranteed segregation for my fragile box from the rest of the packages (it would only have cost me £10 if I hadn’t needed a timed delivery).  Yayyyyyy!  My precious cargo is winging its way to Londonia as I type and I can only pray it gets there in one piece.

In amongst all this, on Thursday I had to take my Dad on a 130 mile round trip to Hospital regarding his hip replacement.  At 2.30am that morning I’d woken with a migraine and despite taking three lots of infant Ibuprofen (the only pain relief I can tolerate) I hadn’t been back to sleep and my head was still banging at 11am when I picked him up.  I don’t know if you’ve ever driven a long distance with a migraine and after only 3 hours sleep but suffice to say it was no fun.  Nope, no fun at all.  The appointment went really well though and they are hoping to do his surgery in the next 3-6 weeks 🙂

My house continues to be on the market and last Thursday I received a viewing request for the same day I was taking my Dad to the Hospital.  You can manage viewings through your online account, so I requested a new date from the viewer.  I heard nothing for 5 days, then on Weds I receive another viewing request for Friday morning at 9am (fucking 9am?!) from a woman with weirdly similar contact details as last Thursday’s woman, ie her name was Cara instead of Tara, her mobile was only 1 number different etc.  Unnerved, I asked the Estate Agent to find out what was going on and it turned out to be the same lady but her details had somehow gotten mixed up.  Hmmmmm, really?!  Anyway, I logged in to my account and confirmed the booking.

While I was at the hospital on Thursday, however, I received another viewing request from the same woman for next Tuesday.  WTF?!  So when I got home at 5pm I rang the Estate Agent and stayed on the line while they contacted the viewer.  Turned out that she hadn’t received confirmation of Friday’s viewing because I’d sent it to the email and mobile number given which of course were incorrect *sigh*.  However, she confirmed she could still do the next morning at 9am.  So despite still having a migraine, having had no supper and a lonnnng day with my Dad at the hospital I tidied up the house ready for the viewing.  At 7am Friday morning I log on to my email…………to find the bitch had cancelled and requested the Tuesday viewing again instead.

I emailed her to say I couldn’t do Tuesday as I was in London so could she still make that morning at 9am.  She emailed back that she was writing a report, so no.  She sodding well knew she was writing a report the night before when she’d confirmed the viewing.  She then went on to slag off the Estate Agents for being “unprofessional” despite the fact it was her messing everyone else around.  So I told her that I was now not available until week commencing 21st Oct and if she requests a viewing then I’ll say I’m busy.  If she’s this much of a nightmare before she’s even looked at the house what would selling to her be like?!

Despite all the above, regular life goes on.  Two months ago I ordered some shoes from an online company I hadn’t used before.  I ordered two styles, kept one pair and sent one back, however they have not refunded me despite me contacting customer services three times.  So I had to open a dispute with Paypal, who also got nowhere with the company so have thankfully credited me the cash while they sort it out with the seller.

Back in June I had an appointment at Sheffield to see an Immunologist who specializes in MCAD.  It’s a 7 hour return train trip, so I booked a hotel to stay overnight and my return train tickets.  Only the hospital cancelled and I never made the journey.  The train company’s T&Cs say that if you don’t make the trip you can get a refund on your ticket, so I applied.  Three months, and several customer services requests later, I had still not been reimbursed so I made a formal complaint, only to be told to ring their web team who would refund me – because I hadn’t already FUCKING TRIED THAT!  Deep breath Jak, deep breath 😉  I am so pissed off with companies trying to fleece us all.  Either not refunding and hoping we’ll forget about it and they can keep our cash, or keeping hold of millions of our money for months all the while earning huge wads of interest.  So I found the email address of the CEO of Transpennine Express and emailed him.  I obviously didn’t expect a response, so imagine my shock when this week I received a reply from the Managing Director of Customer Relations apologising and offering me not only the refund but £50 compensation.  Go me 😀

And to top off my fabulous week my cleaner told me on Weds that she had an interview for a full-time job and if she got it she’d be quitting.  Getting help when you live in a very rural area is stupendously difficult, so is it awful of me to admit to doing mental cartwheels when I found out she didn’t get the position?!

My reward for making it through a stupidly stressful week is to have yet another migraine.  I am typing this lying flat on my back with my head resting on a heat pad, feeling sick to my stomach and with the room spinning like I’ve chugged 10 pints of Cider.   Really God?  Like, fucking really?!  I can only hope my brain heals itself in the next 24 hours before I have to make a 3 hour train journey on a tilting Pendolino otherwise I’m royally screwed.

On that note I shall love you and leave you.  Pray I’m well enough to enjoy my Exhibition – I’ll tell you all about it in next week’s roundup!

 

 

Weekly roundup

I’ve had one of those weeks where every single thing has gone wrong.


Out of the blue at 11am Thursday morning I received a request for a house viewing that afternoon, so a mad scramble ensued to get everything cleaned, tidied and perfect.  After the viewing I received 5 stars on the feedback form, so the house was just what he wanted.  He then preceded to say my immaculate little cottage wasn’t worth what I was asking for it and wanted to knock £25,000 off the price.  I would have laughed if I hadn’t been so fucking exhausted.

Feeling really MEish and unwell, that evening I got into bed just wanting to chill with a brew and Say Yes To The Dress.  Turned on the telly…………and saw the dreaded blue screen with ‘no satellite signal’.   Arrrgghhhhhh.   I eventually worked out that when I was recording a programme the signal went off from every other channel, so I tried all the usual fixes but nothing worked.  *Sob*.  However, I got up the next morning with renewed determination to not spend £60 on a Sky engineer, removed all the cables, cleaned them and put them back and yayyy I’m back to watching grown women fight over whether to buy the sexy mermaid or the humongous ballgown.  Get the meringue you weirdo, it’s your wedding day and the only time in your entire life you get to look like a toilet roll holder princess 😉

I was woken at 4.30am on Saturday by the sound of my dog retching.  Pets at Home no longer stock the hard rubber balls he loves so I’ve had to order some from t’internet.  While I was waiting for them to arrive I gave him a softer ball someone had put in his Xmas stocking last year, only he tore it to bits behind my back and swallowed it 😮  So at 4.45am I was cleaning up vomit laden with bits of white rubber while the dog promptly went back to sleep and had the cheek to snore.  And bugger me, if at 4.15am this morning the mutt didn’t wake again retching, though this time he just upchucked bile 😦  I do hope he hasn’t got rubber lodged somewhere and needs vet assistance – it sounds terrible but I don’t have the time, energy or cash this month to be dealing with a sick Bertie on top of everything else.

My cleaner let me down on Wednesday and my dog walker couldn’t come on Friday.  Again.

I have put on a shed load of weight in recent months and currently look like a Telly Tubby.   I got my winter clothes out this week and my jeans actually laughed at me when I tried to fasten them, so I’ve had to buy some new kit.  I spent ages on the M&S website picking out stuff to hide my Tinky Winky arse, go to the checkout……..and my credit card had expired.  Fuckety fuck fuck.  There’s a link for me to add a new card, but when I click on it nothing happens.  So I stab the keyboard repeatedly with my finger, but surprisingly the link still doesn’t open.  After the week I’ve had I want to blow my laptop to smithereens with a home-made bomb but I resist because knowing my luck I’d be arrested as a terrorist.   I try another browser, same result.  So I have to start from scratch, enter the ‘my account’ section, add a new card, then re-shop and re-checkout.  I’m too tired for this shit.

I have two major photography events coming up – more on those at a later date – but suffice to say I needed to print fifteen A3 size pictures off………..and I ran out of ink.  I also needed to mount and frame ten of the pictures, so I sent for 5 frames off Amazon to match 5 existing frames I have – it’s really important everything is perfect.  I waited 10 days for the frames to arrive, not realizing the order wasn’t fulfilled by Amazon but by some company in outer-mon-shagging-golia, and then when they got here they were fakes and nothing like my existing frames.  Now panicking as I have a deadline, I’ve had to pay £45 more for the frames directly from the manufacturer and my heart is in my mouth waiting for them to arrive and for them to not be damaged in any way.

While I was sat on the lounge carpet mounting my pictures I reached behind me for the scissors……………….and felt something in my pelvis snap.  Ouch.  Ouch.  Fucking OUCH!  My guess would be I’ve subluxed my SI joint and torn the ligament.  Again.   I’m now barely able to hobble and in constant pain during the busiest month I’ve had in a decade.  Thank you Universe for your help and compassion, you twat.

Today my Dad is going to a nearby Castle for a memorabilia weekend to which he’s submitted some images of his Dad who used to work there in the 1950s.  Unfortunately I am unable to take him in the wheelchair as I’m going to a literary festival with a friend, so my brother is going with him.  However, he flatly refuses to push him round in the wheelchair even though he’s totally fit and well, so my Dad asked if he could borrow my little mobility scooter that goes in the car boot.  For 2 years now while my Dad has hardly been able to walk I have tried to persuade him to use a mobility scooter but would he?  No!  He’s either hobbled around in agony or he’s made his sick daughter push him in the wheelchair, but the second my brother tells him to use the scooter he’s on it.  I’m so pissed I could slap the pair of them.  So I’ve had to virtually dismantle the shed to get the scooter out (I don’t use it anymore as I now have a big road scooter), clean it, charge the battery, put it together to let my Dad have a go so he knows how to use it, then spend an hour writing instructions with pictures for my brother on how to take it apart and put it back together for transportation.  Because I’m’ clearly not having a busy enough week.

Since my recent phantom period my stomach has been swollen like a football and I have not been in the best of humours (just in case you can’t tell from this post).  However, today I am meeting my bestie for lunch and we are going to listen to a couple of speakers talk about some shite I can’t even remember and I am very much looking forward to getting out of the house and doing something different.  I’ve been awake since 4.15am, am dizzy and my pelvis is on fire but I’m sure driving 60 miles and sitting on a hard chair for a few hours will be grand and if I pass out my mate will cover me with her jacket and let me sleep.

 

Weekly roundup

My house sale is not going well.  Despite more than 300 hits on the website I have only had 2 viewings and 1 enquiry.  Both viewings gave me excellent feedback (4½ out of 5 on the form) yet neither has requested a second visit.  If a property scores 5/5 on space, location, value for money and condition WTF more do you want?!

I spent another day helping my friend who moved unpack.  His son and wife deemed to visit him last Sunday but despite being there for the entire day when I next went they hadn’t done a fucking thing.  My friend didn’t even have a fridge/freezer (it was built in at his last house), so had no butter, hardly any milk nor any frozen meals (he doesn’t cook as he’s too disabled) yet neither son had organized one for him.  All it would have taken is a look on Currys website and a click of a button!  So when I was there I rang up a local electrical company, ordered one and it came yesterday.   I also went to Argos and got him a microwave, which he needs for soup etc. as he can’t handle pans on the stove.

I have skipped my third period 🙂  Although I had a phantom period yesterday, with period pain, nausea, backache and generally feeling rubbish, on the whole I’ve felt the best I have all year these past couple of weeks.  I have had only 1 migraine this month ( whoop whoop!) and it has been fabulous not to be tortured by endo and adeno pain (I will probably always get some pain due to years of adhesions, but at least my uterus isn’t on fire every 4 weeks).  I’m still absolutely knackered and not sleeping, plus my back is killing me, but I’m so grateful to have a respite from the excruciating noggin pain I can’t even tell you.

I’m enjoying my new Camera Club more than I thought I would.   I was sat on my own this week so two of the female members made a point of speaking to me, which was kind of them.  I enjoyed the 35 minute journey home over the mountains in the dark, fog and lashing rain less but beggers can’t be choosers.

Bertie was the world’s naughtiest dog yesterday.  We got up at our usual 6am and it was chucking down outside.  I opened the back door to let him out for a wee while I prepared his breakfast, he took one look at the weather, turned round and peed up a cardboard box in the hall instead 😮  He hasn’t widdled in the house since he was a puppy the little tyke!  Luckily I caught him mid-stream, shouted a very loud NO! and used my foot to gently shove him outside in the rain, so he got wet in any event.

Whether he likes the rain or not we are having to go out in it this morning.  I’m looking forward to our walk like a hole in the head, particularly when my bed is so comfy and cosy and……well…….dry!  Why has no-one invented an indoor doggie loo yet?  A urinal for mutts is fairly much a necessity I would have thought, especially if it flushed at the press of a paw.  I’m going to fantasize about that on our sopping wet tramp round the woods, while great fat rain drops fall from the trees and inevitably end up down the neck of my anorak.  They’re like heat-seeking missiles and my flesh is the target.  The fuckers.

 

 

Weekly roundup

Is it already a week since my last roundup?!  Where the hell did those 7 days go?  They say time speeds up the older you get but they’re lying.  It doesn’t speed up, it races by like Lewis Hamilton on a track – blink and you’ve missed an entire day.

I had a lovely birthday.  Special days when you have an alcoholic parent can go belly-up pretty quickly and I literally dread events at which you’re supposed to feel happy because I often don’t, but thankfully my Mum was in good form and we had a nice lunch out up the Lakes.  The sun was shining, so I had a gorgeous potter down by the river with Bertie afterwards but was shattered and ready for my bed by 3.30pm.  That’s the other thing about special days – your illnesses don’t take time off and all the excitement and being out of my usual routine actually makes me more exhausted and poorly than usual.  Thanks for that body.  You know you’re getting old when you ask for a set of bath towels for your birthday and are tickled pink when you get them, but I was also given some fabulous chocolates in the shape of cakes – maybe eating them at 9 o’clock at night wasn’t my best ever idea, though, and I went to sleep feeling ever so slightly sick 😉


This week the Camera Clubs went back after the long summer break and I had to make a decision about whether to join another Club or not.  I can still enter International competitions without being a Club member, however  many British competitions are run by the PAGB so I decided to join a Club in a nearby town.  My local Club is 15 mins away in the car, but this one is a 40 minute drive over the fells and coming back at night on twisty, turny mountain roads in the dark when I’m completely shattered is a big deal.  It’s also in the opposite direction of my parents who have Bert for me, so I have to drive all the way to town to pick him up at 10.15pm to then double back to get home.  However, I enjoyed my first evening and the attendees are younger than the old duffers at my local club so that was a nice change.

I’ve been quite reactive histamine-wise the past few weeks and I’ve no idea why.  I had a fairly strong reaction after my supper last night, am getting up in the night to pee which is then making me knackered during the day (3 times last night *sigh*), my skin it itchy, my back is killing me, I wake up sneezing which I haven’t done in forever and I have hives on my bum all of which are my signs that my histamine load is high.   FFS.  I’ve no clue what’s setting it off, though I’m sure my hormones or lack thereof aren’t helping.  I’m now starting to get anxious about eating and I fucking hate being anxious.

To take my mind off my misbehaving mast cells I’ve been working on an image I’ve had in my head for a couple of years.  I had no idea how I was going to achieve it, but circumstances came together this year and aided by my beautiful model (my dog walker’s 14-year-old daughter) I finally pulled it off.  I’m calling it ‘Merlin‘ as the bird she’s holding is a Jack Merlin.

Right, I’m off for a shower cos I stink and you could fry chips in my hair!

 

 

Weekly roundup

I’m sat here wondering how to start my roundup post.  It’s weird, because usually I make a brew and just start rabbiting on about my week like I would if I were having a cuppa with you all in real life, but I’m struggling to find any version of my normal life at the mo.  I’ve definitely skipped a second period.  This has never happened before and I’m hoping marks the beginning of the actual menopause (as against the peri-menopause, which is where your hormones are in decline but you still have regular periods).  In the last few years I’ve had some not-so-pleasant symptoms but it’s been totally manageable, however things have suddenly changed and not in a good way.  I’ll do a proper post about it all this week but suffice to say I feel like death.  The Menopause Fairy, it seems, doesn’t have a magic wand.  Nooooo.  She has a truncheon with which she batters you senseless.  The Bitch.

After telling you all that someone had made a cash bid on my bungalow which had been accepted by the vendors, things took an unusual turn on Monday.  I received a phone call from the estate agent all out of the blue who told me the house was still very much on the market.  The prospective buyers, apparently, had a change of circumstance and pulled out (which is code for they realized how much work was actually involved and said “no way Pedro”).  I got all excited that maybe I could buy my dream property after all, so decided to up my bid by £10,000 to the maximum I can afford…………..and it was turned down.  Again.  Fuck-a-rubber-duck.  So I had hope.  Then no hope.  Then hope again.  Then no hope, again.  My fragile emotions can’t take it and I have spent the week alternating between sobbing and shouting at the dog like a raving lunatic 😉

It’s been a month since we received a letter from the Neurologist saying my Dad’s biopsy for Sjogren’s Syndrome was positive and his GP needed to refer him to Rheumatology.  However, we have not had an appointment through so I chased his GP up and it was obvious she hadn’t even read the letter and had no clue what I was talking about.  FFS.  We were then given the choice of where to be treated.  We’re both so sick of travelling hundreds of miles so really wanted to be seen at our local hospital but the first appointment wasn’t for 3 months (!), so we’ve opted for the next closest hospital and have an appointment in 7 weeks which still feels like an age away but is better than Christmas.

During the school holidays I had my two little models from the village come over for a photo shoot.  I’ve been working on the resulting pictures for weeks and they’ve both been a mare to do, but I finally finished at least one of them which I’m calling ‘Fly Fishing‘.  It’s a picture which looks better as a large print as it contains lots of detail, so I’m not sure how well it will do in competitions where images are looked at for 5 seconds on a small screen, but my little model loved it so that’s the main thing.

It’s my birthday this week and I will be 52.  Holy Mary Mother of God.  I still feel 32 in my head, so when I look in the mirror and this saggy, dried up, unrecognizable stranger stares back at me it comes as a humongous, mind-bending shock.  Who is she?  Who is she?!  And more importantly where have I gone?!!

In desperate need of a good laugh I’ve started following the Menopausal Mayhem Mother on Facebook.  She’s fucking hilarious and has my sense of humour to a T.  It’s comforting to know I’m not the only woman on the planet who is totally losing her shit and swearing worse than a Docker.  If anyone wants to know what they can buy me for my birthday I’ll have a crate of these please 😀

 

 

 

Weekly roundup

As you know, I left my Camera Club this year after being bullied by 3 of the members.  I knew the reason behind one of the women’s behaviour, jealousy, but had no clue what the other two had against me, however I found out at least one of their issues this week.  Apparently, when the UK voted to leave the EU I said something on my Facebook wall one of these women took offence to.  Yes, my friends, she ostracized me at the club because of Brexit.  How old is she, five?!  My own parents voted differently in the referendum – what are they supposed to do, get a divorce?  I’ve never heard anything so pathetic from a grown woman in all my life.  Am I racist, xenophobic, homophobic or vile in some other way?  No.  I just don’t share all of her political views – get over it you saddo.  At least I don’t go round bullying sick people with brain injuries, so that’s a plus in my favour.

I skipped a period this month and am feeling………different, and not in a good way.  I’ll do a post on it during the week but needless to say I am emotionally fragile which made the next piece of news difficult to take.

I’ve lost out on the bungalow I was after, and after spending £300 I don’t have on a structural survey 😦  I’m trying to be philosophical about it but truth be told I’m gutted because it was perfect for me, albeit dropping to bits.  Someone came along and offered cash (who the hell has over a quarter of a million pounds lying around in CASH?!) and I just couldn’t compete with that.  My dreams of a photography studio, not to mention a brand new kitchen for the first time in my life, are gone.  It sometimes feels like I never get a break – little money, no career, no husband, no holidays or anything particularly ‘nice’ ever happens and it gets wearing on my soul.  Even my photography has been ruined by those bitches at the Club.   Then I tell myself to stop wallowing – I have a perfectly nice little house, it’s not like I’m homeless or anything, but I have to be honest and say that at times like this it doesn’t help much.

Not only have I struggled emotionally this week, I’ve also been landed in it physically.  My cleaner is off on holiday for a fortnight, my dog walker is also off and I’ve tried, and failed, to get in touch with my dog groomer for the past two weeks so she is clearly also on her jollies which meant I ended up spending 2 hours bathing, drying, brushing and clipping Bertie myself and was left crippled with pain.   I’m often asked why I don’t have more help in the house and this is why.  You are let down constantly.  Of course people are allowed summer holidays, but it’s on top of Easter holidays, half term holidays, bank holidays and Christmas holidays – the trouble with all that being my illness doesn’t recognize holidays and take time off.  Then there’s: “my child is sick and off school so I can’t come”, “I’m having physio so I can’t come”, “my child is in a school play I want to see, so I can’t come”, “I’m taking my pet to the vets so I can’t come”,  “it’s my husband’s birthday, so I can’t come”, “there’s a school coffee morning so I can’t come”, “I’m working at my other job, so I can’t come” and all the other reasons I get all year for leaving me in the lurch.  It’s more stressful employing people than just doing stuff yourself.

I’m aware this is yet another whingy post.  Not only have my hormones done a bunk, my sense of humour has also vamoosed and I am genuinely turning into a grumpy old git.  A fat, frumpy, miserable old git.  My bestie and I have often mused over why old women are irritable, moaning minnies and I now realize that oestrogen is the Angel hormone and when it fucks off we turn into Satan.  Even the dog is getting the brunt end of my short fuse, though he’s benefitting from my constant munchies and has had more titbits this year than he’s had in the previous five.  From his perspective, being told off on a daily basis is tolerable in exchange for bread rolls, Walkers crisps and the odd forbidden ice cream and if push comes to shove and I get really narky he can always bite me 😉

 

 

 

In an ideal world…

….. what would I actually want and need from a good health-care service?  We whinge a lot about what we don’t receive and don’t talk about what we’d ideally like.

1.   BELIEVE US

A poll was conducted recently on the ME Association website about this very issue, and number 1 on the list of things we’d all like is simply to be believed.  It’s not much to ask is it, doesn’t cost anything, but would make a massive difference to our experience of living with chronic illness.  Yet I know it often doesn’t happen.

My first example of not being believed took place when I was just 14 years old.  I’d had back pain since I was 11, brought on by a fall through the 1st floor of an outbuilding, yet because nothing showed up on x-rays and I complained that physio made me worse not better, I was told I was attention seeking and was obviously just unhappy due to problems at home.  And then when I was 16 CT scans were invented.   I insisted on having one, which showed rare congenital spinal stenosis necessitating urgent decompression surgery.  Obviously it’s not the medical profession’s fault that X-rays don’t show this kind of issue and CTs weren’t available, however to tell a teenager who is sleeping on a board due to severe back pain and can no longer take part in the sports she loves that her pain is “all in her head” is wrong on every level.  This disbelief and blaming of me, the patient, for my own health issues has been a long running theme throughout my life and makes me really, really angry.  That anger transfers as mistrust in the medical profession, which in turn does not lend itself to good relations with my caregivers.  All it would take for this mistrust not to have developed would be for a doctor to have said to the young me “I know you’re in pain, I know there’s a pysical problem, but unfortunately we don’t yet know what that problem is.  While we figure it out we’ll work together on pain relief until we find something which works for you”.

2. COMPASSION

Hot on the heels of being believed is to be treated with empathy and compassion, which you would think is the bedrock of medical care yet has been largely absent in my dealings with doctors.

Following meningitis, I was bedridden with M.E. for a decade during which time I spent 4 months in a semi-coma unable to open my eyes and crawled to the loo and back on my hands and knees.  Yet I vividly remember a visit from a GP who said to me and I quote “my wife is away, I have 2 children and a full-time job – you don’t know what tired is!” and he was deadly serious.  A subsequent visit from a locum GP told my parents I was so critically ill I might not make it through the night and asked whether I wanted to spend my final hours at home or in hospital.

We’re not daft enough to think that doctors have all the answers to our health issues, but to be treated with dignity and respect costs nothing and I do expect that from the people involved in my care.

3. MONITORING

I have been ill now for 26 years and during that time I have had no monitoring from my GP, nor anyone else.  I was bedridden for years, which can cause pressure sores, muscle wasting and issues with continence, yet I only ever saw my GP if I requested it and was never visited at home by a nurse.

As we age, regular monitoring becomes ever more important.  We are more prone to osteoporosis, blood pressure issues, high cholesterol and heart problems due to lack of activity, plus vitamin D deficiency if we are housebound, and things like low thyroid function, B12 deficiency and anaemia are easily missed when one is exhausted all the time.   It’s not too much to ask to have a yearly medical and blood tests.  It would cost peanuts in the scheme of things and take 15 minutes of a nurse’s time (30 mins if they had to come to the house).

4. A SPECIALIST POINT OF CONTACT

Getting on to the nitty gritty of living with chronic and or/complex diseases, I’m sure all of us would love a single point of specialist contact like MS patients have with their MS nurse.  My GP is really nice and very approachable, but getting in touch with her is like pulling teeth and she has 7 minutes in which to speak to me, consequently our conversations are rushed and stressful and I know she can’t wait to get off the phone and on to her next patient.  Nurses often have more time and if one had been trained in my particular illnesses and I could ring her for advice on a particular injury, or worrying symptom, a change of drugs or even simple things like being consitpated it would make the world of difference to me.  I have felt utterly alone in dealing with my diseases over the decades which has definitely impacted my mental health.

5. SKYPE!

We are very lucky to live in the digital age, yet here in the UK we seem to be stuck in the 20th century.  When you have a disease like M.E., and just getting dressed can make you feel like you’re dying, medical professionals need to make more use of the internet and Skype appointments.  We don’t always need to be physically present for a consultation and it would make the world of difference to severely ill patients if they could speak to medical professionals over the net, or even over the phone!  This is particularly important for patients, like myself, who live in rural areas and have to travel huge distances to hospital.

As my regular readers know, my Dad is having health problems and is under the care of neurology at a hospital 90 miles away.  We had an appointment recently with the spinal surgeon.  It had taken us nearly 2 hours to get there, the Clinic was running late so we’d sat in the waiting room for an hour, and we went in to the appointment only to be told “I’m not going to do your spinal surgery until you’ve seen the orthopaeds about your hips, so make another appointment at reception for about 6 months time.”  Really?!  Literally an entire day spent travelling and sitting around a hospital for an 80 year old with crippling back pain for that, when he could have rung us and said the same thing.

6. CO-ORDINATED CARE

This is the Holy Grail for anyone with multiple and/or complex diseases.  At the moment each Consultant deals with their particular speciality and doesn’t talk to the other health-care providers.  My Dad is a case in point.  He needs spinal surgery so is under the spinal team at Newcastle.  He’s also under neurology at Newcastle due to severe neuropathy.  He’s been diagnosed with the auto-immune disease Sjogren’s Syndrome, so will be seen by Rheumatology at our local hospital.  He also has a kappa paraprotein in his blood so is under Haematology at our local hospital.  He needs a hip replacement, so is being seen by Orthopaedics at Hexham hospital.  He is B12 deficient, so has injections at our local health centre from the nurse.  He needs cataract surgery, whichis being performed at Sunderland Eye Infirmary.  And his GP works 2 days a week so we can never get an appointment with her.  There are times I’ve literally pulled my hair out trying to co-ordinate his care and, before his diagnoses, for each Consultant to speak to the other Consultants about his symptoms.

Because each Consultant works independently, care is not continual.  Again, my Dad is a classic case.  The local muscular-skeletal team knew he had spinal stenosis so referred him to the surgeons at Newcastle.  He was then seen as a new patient, so his MRI was unnecessarily repeated and he was then placed at the bottom of an 8 month waiting list.  When we finally saw the surgeon he said my Dad had more pressing issues with his nervous system, so referred him to neurology where he had yet another unnecessary MRI scan, then was seen as a new patient and placed at the bottom of a 6 moth waiting list (it was only my huge efforts for him to be seen urgently which resulted in a faster appointment).  The neurologist ordered tests for Sjogren’s Syndrome which came back positive, so referred him to Rheumatology where he is now being seen as a new patient, will have all his tests unnecessarily repeated and placed at the bottom of an 8 month waiting list.  And so on ad nauseum.  It has taken 1½ years to finally get to the bottom of his multiple issues because for each referral he was treated as a new patient and all the tests and investigations were ordered afresh.  If you are referred by a Consultant to another Consultant you should be treated as an ongoing patient, which would mean much faster appointments.  Test results also need to be transferred with you so they don’t have to be repeated!  It’s not rocket-science, particularly when we have the internet and patient records can be accessed online from any hospital in the country.

7. ACCESS TO SPECIALISTS

There will always be times when you need to seek specialist help, however accessing knowledgeable Consultants is usually the hardest part of having rare and/or misunderstood diseases.

There are various ME/CFS clinics around England – my nearest is a 180 mile round trip away.  There are only 2 specialist EDS Centres in England – both are a 6 hour round train journey away, and in any event don’t see hEDS patients who also have M.E.
My nearest MCAS consultant is also a 6 hour train journey away, and recently refused to see me.
There are no specialist services in Scotland, Wales or Northern Ireland for any of my 3 diseases as far as I’m aware which is a disgrace and I’m surprised patients haven’t banded together and sued the health service for lack of care.

My GP is under the impression that, having been diagnosed, I don’t need to see a Consultant because none of my conditions are curable and she can provide ongoing care.  This is not the case.  I have severe endometriosis and need a hysterectomy.  I was seen at the specialist endo centre, 90 miles away, last year but due to my severe MCAS-related drug allergies they wanted to speak to my Mast Cell consultant before deciding on surgery.  Only, I don’t have one and because there was no-one for the Gynaecologist to consult with over my MCAS she decided blind surgery would be too risky, so I’m now continuing to live with excruciating chronic pain instead.  A few years ago I needed a tooth extraction.   I had to have this done in hospital as the tooth roots were near my sinus cavity, and again the Dentist wanted to speak to my MCAS consultant about how this would impact my mast cell disease.  Only, I don’t have one.  I recently had an endoscopy for my stomach issues and severe GERD and in order to know if my issues were mast cell related I needed a biopsy where the cells were ‘blue stained’.  I requested this, only they wouldn’t do it because the order hadn’t come from a Consultant.  That’s because I don’t have one.  So now I know I have gastritis but not why.  It’s for situations like these that having a specialist referral point is so important, yet they are lacking for the majority of M.E., hEDS and Mast Cell Disease patients.

CONCLUSION

Notice that not one of my wish list includes actually being ‘cured’.  I know that’s not possible, but just because I can’t be ‘cured’ doesn’t mean I shouldn’t be monitored or have access to specialist services should they be needed.  Two of the items on my wish list would cost money, but the majority would either cost nothing or peanuts.  All it would take is a will to offer services for severe, chronic and/or complex patients and it’s the will which is lacking, for which there really is no excuse.