Category Archives: Ehlers-Danlos Syndrome

Weekly roundup

I have had a horrendous few days.  The depths to which people can be vicious and vindictive shocks me, especially when they are grown adults.  I have alternated all week between being  angrily defiant to being a weepy, crumbling wreck – I am too ill for this crap which is wholeheartedly undeserved.  I wrote about the situation in my last post so I won’t harp on.

As if being slandered and publicly humiliated weren’t bad enough, I have had one of the worst colds in years this week.  It started with an 8 day migraine, then came razor blades every time I swallowed and three days later the sneezing, streaming and coughing began and to add insult to injury I still have a banging head.  Due to that, and the almost unbearable stress of recent events at my Camera Club, I have barely eaten or slept for days.  The Pheasant splattered by a car on the road outside my house feels better than me today.

I have felt so poorly I have done nothing and seen no-one.  I speak like Donald Duck, cough like a 40-a-day chain smoker and you can image what massive stress + a virus has done for my M.E.   Consequently I really don’t have much to tell you.

The only bright light on the horizon is the news that I won another photography medal this week at an international Salon.  Silver, for my new picture called ‘On the shelf‘.  My friend told me she now has congratulations fatigue.  Another medal?  Yeah, whatever……. 😀

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Weekly roundup

This week has been physically tough.  My period arrived (I swear I’ll still need sanitary products when I’m dead cos Aunto Flo is showing zero signs of buggering off!) and I am currently on day 7 of a migraine.  My knees and elbows are having a pain flare for reasons unknown and I’m still so brain fogged/exhausted I feel like I’m drugged.  But other than that I’m good 😉

On Monday I took my Mum through to the city to visit the hearing aid clinic at the Hospital.  She wears two hearing aids but they simply won’t stay in her ears and she’s already lost one which dropped out as she went round the supermarket.  It turns out she has very narrow ear canals and even the smallest aid is too big, so they’re custom making her ones which sit inside the ear itself instead.  As my Mum rarely gets out of the house we made a day of it, having our lunch out and a tootle round Matalan as it’s all on the flat for the wheelchair and has a good sized disabled changing room.

The rest of the week I’ve been trying to organize repairs to my car port, the back of which is made of old wood which has totally disintegrated.  All was going fine until we discovered asbestos and then it was on to plan b!  When you have M.E. you barely have the energy to get dressed let alone for events to go belly up.  So now the job is much more complicated than I expected and will take twice as long – of course it will, because Mr Sod has it in for me.

As I wrote about in this post my Dad and I made a last minute trip to the Hospital in Newcastle on Friday.  I was expecting them to finally say his neuropathy was idiopathic (ie no explanation could be found) and to tell him he just has to learn to live with it, however they’ve said that idiopathic neuropathy isn’t usually progressive and severe like my Dad’s so they are still searching for a cause, which is great news but means yet more 180 mile trips to the Hospital for tests and appointments which nearly kills me and takes a week to get over.

Yesterday I found out I’d won two more trophies for my photography in an annual competition which involves all 52 camera clubs across the north of England 🙂  I genuinely wasn’t expecting them so am tickled pink.  However, my joy was momentarily marred by the news that a smear campaign has now been started against me by the bullies at my Camera Club who are saying I’m writing shit about my Club on Facebook.  It is blatantly untrue.  I have written one post on Facebook about their behaviour and the way they have treated me, in a measured non-ranty way and mentioning no names, but would never in a million years ever trash my club because I’ve loved being a part of it.  The sad part is, people who aren’t even on my Facebook and haven’t read the post are believing the bullies 😦  This is what bullies do when their behaviour is exposed – they deflect negativity away from themselves and on to the victim, who eventually ends up the bad guy.  That people fall for this bollocks is really fucking disappointing.  When I find myself questioning why this situation has come about I like to read this quote and remember it’s not about me, it’s about the bullies’ inner demons:

Today I am looking forward to meeting my bestie for lunch and a catch up, but first I am eager to take the mutt out for his morning constitutional.  Spring has officially sprung here in the UK and there is no prettier place on earth.  The hedgerows are covered in fluffy blossom, daffodils nod in the breeze, birds are busily nesting, I saw my first butterfly yesterday even though there is still a sprinkling of snow on the fells and as Bertie and I wander by the river, hoping to catch a glimpse of wild Otter, I am thankful every day to live where I do 🙂

 

 

Weekly roundup

Monday was a big day.  Not only did I have my scan, which thankfully showed that no cancer was present in my lymph nodes, I then had to come home to my local health centre for a smear test.  Now, I know they say smears are “uncomfortable” for a few minutes however that’s not been my experience.  I haven’t had children, nor had sex for a decade, and when she inserted the speculum it was a bit like trying to shove an elephant through the eye of a needle.  The burning, stinging pain eventually became unbearable and, being as though she couldn’t get the ginormous thing in anyway, we both agreed it wasn’t working.  Thankfully she had a smaller, old-style, metal speculum which she tried instead and this time it was successful.   This is what always amazes me about health care – that a one size fits all approach is used.  How can a 5ft 2″ size 10 women whose never had kids have the same size vagina as a 5ft 6″ size 16 woman whose had 3 children?!  It’s the same with just about everything.  They use the same size endoscopy tube on me as they use on a 6ft 2″ man and I know who feels like they’re choking the most!

Wednesday was the last competition of the season at my Camera Club.  As the bullies now make me feel so uncomfortable I hadn’t been for a couple of weeks, but I didn’t see why they should deny me the pleasure of my favourite competition nights, so with some trepidation I went along.  Most of the Club didn’t know I was leaving and that that would be my last night, so I told several people who were all totally shocked – not only that I was going, but why.  I received lots of lovely comments, and hugs, and to cap it all I discovered that not only had I won the advanced print league this year I’d also won the advanced projected image league too.  I know it’s a bit childish, but I kind’ve wanted to stick my middle finger in the air and tell the bullies to go swivel on it 😉  They have chased away the best photographer in the Club to a rival Club, which clearly shows they don’t have the best interests of their Club at heart and the fact they are all now on the committee, in fact one has put herself up for Vice Chair, stinks.

Toda is Mothering Sunday, so I’m taking my folks out for lunch.  For the past several years I’ve absolutely dreaded events like today, as my Mum would be drunk before I even got to the house and either be finding everything hilarious so having a conversation over lunch would be impossible, or being a total bitch so I’d have a knot in my stomach the entire time as she whinged about everything and constantly bullied my Dad.  These days she isn’t drinking quite so much, but she is still drinking and I have no clue how inebriated she will be when I pick her up.  I’d rather be doing something else it has to be said.

I am covered in hives from the stress of recent events, am peeing constantly and not sleeping – all signs my histamine bucket is full to overflowing.  My armpit, and elbow, are still swollen too and now I know it’s nothing sinister I’ve written to my GP and asked her for a referral on the NHS to a mast cell specialist.  Just because I have a rare disease and live in a rural area doesn’t mean I should receive no health care!  It’s been 6 years since I paid to see Dr Seneviratne for my diagnosis and I haven’t had any follow-up care at all, as in 2013 there were no NHS specialists seeing MCAS patients and I couldn’t afford any further appointments with Dr S privately.  However, things have definitely moved on and now there are some NHS immunologists who have taken an interest in us weirdos and are willing to see us.  Sadly, however, there are still none anywhere near me, so I’ve chosen Dr Ravi Sargur in Sheffield who seems to have a good reputation in the MCAS community.  Sheffield also now do mast cell testing on the NHS and have a dietician who’s versed in low histamine food 😮 .  Of course, it will take several months for my local health authority to agree to fund the appointment then for me to go on the waiting list to be seen, and it’s a 7 hour return train journey for me, but I don’t seem to have any other option – when your limbs start swelling up for no good reason it’s definitely time to get checked out.

Right, I must get up and cracking.  The clocks went forward last night so I’ve lost a whole hour.  I’ve recently been waking up every morning at 5.30am, so I thought it would be brilliant that it would actually now be 6.30am and at least the sun would be up but no such luck…………..I woke at 4.50am instead and couldn’t get back to sleep 😉

It’s good news!

I had my ultrasound today and the doctor could find nothing wrong with my lymph nodes, either in my armpit or my elbow which effectively rules out cancer (well, that and my recent normal blood results).  I honestly felt sick all the way to the hospital as I was convinced they’d find something sinister so you can imagine the smile on my face on my way out and the relief that all seems to be fine!

I asked him what the swellings might be and he said “could be bone, could be soft tissue – we can’t see either on ultrasound”, so I definitely need to speak to my GP about where we go from here as swellings in your armpit obviously aren’t normal.  Plus, I have been feeling properly rubbish since before Christmas with 24/7 nausea, god awful stomach and bowel pains (nearly called an ambulance last night as I was bent double and the sweat ran off me) plus months of I’ve-just-reached-the-summit-of-Everest-without-oxygen exhaustion.

I was amazed when the doctor performing the scan had heard of hEDS and mast cell disease – 10 brownie points 😉

I’ve been having a rough time emotionally with the peri-menopause recently – crying for absolutely no reason and feeling really quite depressed, which as you know isn’t like me at all – so I honestly feared for my mental health should the news have been bad.  The thing that’s kept me going this past 2 weeks is all the lovely messages I’ve received from my friends and you my fabulous followers, which have meant the world.

God, I miss drinking!   If my mast cells would let me I’d be downing a bottle of plonk and getting ever so slightly sloshed this evening!  As it is, I’m treating myself to fish n chips, even though I will probably flush for two hours afterwards and spend the rest of the night in stomach hell 😉

 

 

Weekly roundup

I finally received a letter on Thursday saying my scan is booked for tomorrow (Monday).  They legally have 14 days from referral to see suspected cancer patients and it’s exactly 14 days!  I did try to ring my GP to let her know about the new elbow lump I found, but after 4 attempts (three times being put on hold forever and the fourth being hung up on when I finally did get through) I gave up and dropped a written note in to her instead!  I’ll definitely mention the lump to the scanning person though.

I think my Mum is freaking out a bit about the situation.  When I told her about the second lump her first words were “if anything happens to you you’ll have to tell us what you want done with the dog!”  Er, thanks ma – I’m not dead yet y’know!

I tried Googling mast cell activation disorder and swollen lymph nodes and came up with nothing.  However, it is found in systemic mastocytosis so hopefully the swellings will turn out to be benign and if that’s the case I’m asking to see a consultant who knows about mast cell diseases.  I haven’t seen anyone since my diagnosis 5 years ago and just because a disease is rare doesn’t mean you should receive no medical care whatsoever.

On Tuesday I, yet again, chased up my Dad’s CT scan results only to be told, yet again, they’re not back yet – it will be 6 weeks on Tuesday.  My family are all totally pissed off with the situation now, so decided to pay to see a neurologist privately.  I chose one who also works for the NHS at the RVI so that he would have access to my Dad’s NHS notes and test results, and rang up for an appointment.  The Nuffield website says that if you self pay you get to see a Consultant within 24 hours.  Lying little fuckers.  The first appontment we could get is on 9th April!!  So I’ve booked it, but we might have heard back from the RVI by then.  I was so angry that I put in a complaint to the Advertising Standards Authority about the misleading nature of the Nuffield website.

The Gods took pity on me for once, and to counteract all the doom and gloom I found out at the start of the week that my image of a Child Bride had won a gold medal in an international salon in Belgium.  Not only that but it was also awarded a medal for best colour print of the entire exhibition and was placed on the cover of the catalogue 🙂  In the same Salon, my Evacuee photo was also highly commended and received a Photographic Society of America ribbon.  I’m chuffed to little meatballs 🙂

I didn’t do much for most of the rest of the week because up until Thursday I was poleaxed by exhaustion.  It’s just ‘normal’ exhaustion, as opposed to the fluey, weak, poisoned exhausted I get from a bad ME patch, so I suspect it’s just hormone/menopause related as it comes and goes and by the weekend I felt OK(ish) again.

To take my mind off everything I attempted another photo I’ve had in my mind for a while.  It’s called ‘On The Shelf’ 😀

I had a nice day on Saturday.  My neighbour turned 80 and her son had arranged an afternoon tea party at a lovely hotel up the lakes for her friends and family.  My parents, and Bertie (who my neighbours ruin), were also invited and it was a nice opportunity for all of us to get out of the house and do something different.

This morning a friend has invited me for breakfast at a nearby cafe, so I’m going to take Bertie out for his morning constitutional then meet him for tea n toast.  My friends have been really supportive since I found my lumps a fortnight ago, as have several of you my lovely readers, and I am grateful for all your messages and good wishes 🙂  I won’t find anything out tomorrow – it’s not like the scanner operator will tell me whether or not I have cancer – but as soon as my GP rings me with the results I’ll let you all know.

 

Weekly roundup

I haven’t had my scan yet for my “suspicious lump”.  I’m trying not to think about it but it must be playing on my mind because I’m not sleeping well and have been having lots of stressful anxiety dreams.  Understandable I guess.

I rang about my Dad’s CT scan results and they are still not back.  It’s been nearly 5 weeks now and we’ve all had enough, so we’re paying to see a neurologist privately just as soon as we can get an appointment.  He first saw a consultant 15 months ago, yet we still don’t have a diagnosis and he’s received absolutely no treatment, despite going from being able to walk 6 miles to being in a wheelchair.  It’s a disgrace.

I posted on Facebook this week about the fact that I’m leaving my Camera Club and I said exactly why.  Ostracizing is the most common form of adult bullying and bullying is something I thought I’d left behind 40 years ago in the school playground.  The whole point of ostracizing someone is to cause psychological pain and distress, as if I don’t have enough on my plate already.  Quite what these 3 women’s issue is with me I have no idea, though I know for a fact with 1 of them it’s pure jealousy.  I am not keeping quiet about these bullies, however, and will name and shame them at every opportunity.  The fact that one of them left their former Camera Club because they were bullying a member there, and have come to my Club and bullied me, says a lot about them as a person.  The thing that makes me furious is that all 3 bullies have put themselves on the committee for next season.

I desperately needed to take my mind off everything this week, so on Wednesday my bestie and I went up the lakes to attend a literary festival and have a bite of lunch.  We went to a fascinating talk on brain gender by the neuroscientist Gina Rippon, who had some very interesting things to say on whether there are innate differences between male and female brains.  Google Rippon, though, and you will find a lot of trolling.  Not only is she female (how dare women say that they aren’t, in fact, inferior to men) but she disputes the status quo.  Way to go Gina is all I have to say 🙂

Other than that I’ve achieved nothing.  The weather has been atrocious and I am poleaxed by exhaustion at the mo.  I don’t know whether it’s stress, hormones, the fact I’m not eating properly (I feel sick constantly and have awful tummy pain) or probably a combination of all three, but my mojo has buggered off to pastures new.  Despite that, I have forced myself to do some photography this week.  I’ve taken hardly any pictures since last November, probably because I haven’t been happy at my Club, but I refuse to let those bitches destroy my passion so I have spent a few hours in the spare bedroom wearing a ballgown and wielding a sledge hammer!  Don’t try this at home, especially if you have hEDS or ME 😉 .  I ended up with this picture entitled ‘Breaking the Glass Ceiling‘.

Weekly roundup

Monday I chased up my Dad’s CT scan results only to find the neurologist hasn’t even had them back from the scanning unit yet.  It will be a month on Tuesday.  FFS, if that’s how the emergency neurology clinic works I’d hate for him to be in the regular clinic.  He has been progressively ill for 15 months now and we are no further forward – no proper diagnosis and he’s had no treatment whatsoever.  The man can hardly walk now for heaven’s sake!  We all feel totally abandoned by the NHS.

Wednesday I found a soft lump under my left armpit – I was drying my hair and caught sight of myself in the mirror.   I ummmd and ahhhhhd over whether it really was a lump until I took a photo to show my Mum – it’s then I realized that, yes, it really was a lump and there seems to be swelling going up my arm above it.   So I have an appointment with my GP tomorrow for her to have a look.  Luckily I only had bloods done last week and all is fine, and I had a mammogram last year and that was also fine, so I’m sure it’s nothing to worry about.

My cough has improved a little bit now my H2 blockers have been increased but it’s still not gone.  I know I should be trying the stronger PPI meds like Omeprazole but I’m too terrified to try a new drug, so am happy to stay on the Famotidine for now and just live with the cough.

I made a big decision this week.  Although I love my photography, I’ve been unhappy at my Camera Club all year.  My lovely friend L left as she moved house and it’s really not the same without her as I don’t have any other close female friends there.  On top of that, two of the women have sent me to Coventry and I have absolutely no clue why they are no longer speaking to me.  It must be something drastic to deserve such treatment but I can’t think of anything I might have said or done for them to hate me so much.  And then there is the lady I’ve written about before who clearly has an issue with me and is so intimidating she makes me feel physically ill.  I go to my Club to de-stress not to add to it, so I decided this week that I will not be going back next year 😦  I may just take a break and then see how I feel, or I may decide to join another Club (not to blow my own trumpet but I’m a fairly good photographer and there’s one particular Club who have been gagging to have me for ages).  We finish in a couple of weeks then I have the whole summer to decide what I’m going to do.  I’m not giving up my photography though – no sodding way – and can continue with that whether I’m at a Club or not.  I’ve been really upset at the thought of leaving but now it feels like a weight has been lifted from my shoulders and that’s how I know it’s the right decision.  Yes it means the bitches have won, but I will be telling anyone who asks why I’ve left and who the women involved are, so I’ll leave them with the fallout from that.

Right lovely people, I need to get dressed and take the mutt out.  At least it’s not snowing this morning – we got caught in a freak storm yesterday, with hail so hard it felt like it was ripping the skin off my face, and returned home like a pair of drowned rats 😉