Weekly roundup

I’ve had two comments left on my blog this week telling me how to cure myself.  One is to have coffee enemas and the other is to avoid high oxylate foods like almonds and spinach, all packaged foods and wheat.  I’m aware they were just trying to be helpful, but maybe it would have been polite to actually read my blog before giving me advice.  What I will say, though, is that you have to be extremely careful doing enemas if you have EDS as our very thin skin perforates easily and we could rupture our bowel.

I nearly had a blue fit this week when someone told me Dr Seneviratne was no longer going to be seeing patients.  He’s the only MCAD specialist in the entire UK quite frankly, especially if you have Ehlers-Danlos related mast cell disease.  There is only one other doctor who sees MCAD patients, Dr Grattan, and as a Dermotologist he specilalizes in skin symptoms whereas all the MCAD patients I know have much more problems with the gut and bladder.  However, I’ve since heard that Dr Seneviratne is only taking a 3 month sabbatical from Nov-Jan and will be back in 2016. I do hope so cos otherwise we’re all up shit creek without a boat let alone any paddles.

The Hitler-esque treatment of sick and disabled people here in the UK continues unchallenged.  Shit-For-Brains (or Work & Pensions Secretary Iain Duncan Smith as he’s known to most people) has decided to target this group in his next round of cuts.  Er, I’m sorry but hasn’t he been targeting them since the day the Conservative Party got into power?!  He wants eligibility criteria for claiming sickness benefit tightened up, even though it’s already tighter than a duck’s arse and that’s water tight, and thinks it should be a short-term benefit to help people back in to work.  Hurrahhhh!!  Chronic diseases are all now cured, praise be.  The effect of his benefit reforms can be seen in this article which shows that 10,000 people died between 2011 and 2014 after being found “fit for work”.  Let’s be honest about the situation – the Government want to scrap the welfare state.  Period.  The sooner the European Court put this Government on trial for abuses against Disabled people the better.

Two more of my friends with ME have, in the past few months, also been diagnosed with Ehlers-Danlos Syndrome.  One has had severe ME for two decades, the other severe ME for three years.  It’s also fairly obvious that both have mast cell disease, although their health issues make it almost impossible to travel to see the right doctors for a proper diagnosis.  The evidence for this triad of diseases is stacking up by the day and points ever more to my Canary theory of mast cell activation being at the root cause of ME in a sub-group, if not all, patients.  I’ve always known that ME isn’t a neuro-immune disease.  It’s an immune disease full stop.  The effects on the central nervous system are a secondary symptom of immune activation (the canary post explains how mast cells affect the brain and nervous system).  Researchers are looking at the wrong things and going down the “one virus causes ME” road is a complete waste of time and money.  They seem to think ME is “multi-factoral” but it’s not.  It affects virtually all bodily systems, but it has one root cause.  Find out exactly what’s happening with the mast cells, find a drug to treat that, and I am 100% certain ME is totally curable.  But what do I know?  I’ve only had the Damned Disease for 21 years.

This next plea goes out to anyone with Ehlers-Danlos in the north of England.  As you all know, there are zero EDS specialists in this part of the country and we are all left without care.  A north east sufferer is working with her MP to change the situation but needs to hear from patients.  Although the article refers to Northumberland, as anyone living in Cumbria knows we often have to traverse the Pennines to see consultants in Newcastle, so will be able to access any services set up in the North East.  PLEASE please get in touch with Ronnie Campbell MP and inform him of your condition.  If we don’t speak up nothing will change!!!!!!!

I spent a very emotional day on Tuesday bawling my eyes out for absolutely no good reason.  I hardly ever cry – there is absolutely no point when you live alone because there is no-one to comfort you or make you a brew when you’re exhausted after your melt down plus it gives me headache.  However, I was obviously seriously hormonal and just couldn’t help myself.  Pesky peri-menopause has a lot to answer for ;-)

Biomechanical Assessment

Yesterday I had a biomechanical assessment at a sports injury clinic.  I chose them because they mentioned both hypermobility and marfan’s on their website, so at least they seemed to have some idea of the kinds of problems us bendies encounter.  They also work with professional dancers, who often also tend to be hypermobile.  The assessment lasted 90 minutes and cost £48 so wasn’t cost prohibitive.

The reason I went is that, over the past 2 years, I’ve had both hip and knee pain that I haven’t had before and I wanted to know what the cause was.  When I see the podiatrist on the NHS all she talks about is my foot arches, and when I see the Physio she treats me but doesn’t diagnose.  No-one diagnoses, probably because they’re clueless – not having an EDS specialist in the north of England is a pain in the arse.

There was more talking than actual physical assessment which was a tad disappointing, although she did fully take on board my mast cell issues (ie no manipulation, massage or drugs were on the cards) and my skin fragility (pertinent when using braces or insoles).  Having said all that I totally disagreed with her conclusions, so feel I’m not much better off than before I saw her.

She thinks that it’s the looming menopause causing my joint problems and my EDS is largely irrelevant.  Hmmmmm.  She’s just gone through the menopause herself and told me “her joints fell apart” which I’m not disputing.  But was she on crutches for 9 months?  Did she have to use braces on her knees?  Did she dislocate anything?  Of course not.  So how my EDS is irrelevant is hard to understand.  I know my fluctuating hormones are causing havoc with my body in all sorts of ways.  I also understand my collagen is buggered.  But I still want to know exactly what’s going on with my joints because until I understand why my joints are playing up I won’t know how to either stop the rot or manage it properly and I can’t see how anyone else could know how to manage the situation either unless they understand the cause.

She did assess my feet and concluded they weren’t that bad.  She did slate my current insoles, however, which I’ve known for some time aren’t right.  My NHS podiatrist has referred me to orthotics to have a moulded insole made, but the woman yesterday says they won’t be suitable for me because they’re made of very hard material (which to be fair the podiatrist had warned me about too) and will simply rub my skin off.  One of the reasons I went to the sports clinic is that I knew they did a much wider range of insoles and I wanted to see if they had something more suitable.  Which they did.  So I had a mould taken of my feet, using a foam box rather than plaster of paris as she was concerned that the force used to remove the plaster mould might affect my joints, and am having some custom made insoles done which are super shock absorbent which should minimize the impact trauma of my weight bearing joints, eg. hips and knees.  They cost £40 per pair, which isn’t too bad considering I pay £16 for my NHS ones and they’re next to useless.  Buying my own insoles also means I can get as many pairs as I like.  The NHS provide one free pair and after that you have to pay, if you can get them at all – I requested 2 pairs last year, waited 3 months, and then only received 1 pair!

She felt my knee pain, which is on the inside ligament of both knees, is due to my knees rolling inwards and, although insoles help, they don’t cure the problem.  She has given me some minimal exercises to do to strengthen the muscles on the inside of my thighs which are very weak.  To be fair she was very cautious and appreciated I can’t do normal exercises because of my ME which was great.  I have to sit in a chair with a soft ball or towel between my knees, raise my legs no more than 40 degrees and at the same time squeeze the ball or towel for 5 seconds.  I do as many repeats as feels comfortable, never getting to the stage that my muscles or groin area ‘burn’.  I then have to rest for 3 days to allow my body to heal (it’s the healing process which actually strengthens our muscles, not the exercise itself) before repeating the exercises.  It will be a very long process but at least it’s better than doing nothing at all.

I have been icing my knees at night and taping them during the day and have found that this is helping the pain, so she just said to carry on with that for the time being as the ligament is obviously inflamed and supporting it should help it to heal.  I struggle with regular joint supports, as the pressure sets off my dermographism (mast cell hives), and proper physio tape makes my skin itch like mad, so use a self sticking bandage from Boots which works for me as I can alter the amount of pressure applied and also means I can bend my legs without the support digging in the backs of my knees making my skin raw:

Photo of knee tapingThe clinic offer a 3D gait assessment which I thought would be really useful, but after chatting to the woman I don’t think she has enough knowledge of EDS to make doing this worthwhile.  She just seems to think that once I’m through the menopause everything will settle down and has no concept that I could actually end up in a wheelchair if my joint pain progresses much further.

So, was it worth going?  I think yes, if for no other reason that if I hadn’t explored this avenue I would always have wondered if it would have been helpful.  I also think the insoles will be great and just what I need.  However, I’m no further forward in finding out the cause of my progressively painful, stiff and unstable weight bearing joints or what to do about them.

Weekly roundup

We have had an absolutely dismal summer here in the north of England.  It’s now nearly the end of August, I have not had my shorts on once and I have only had my central heating off for 10 days in the past year. The upside is that I’ve saved myself money not having to buy sun-screen.  The downside is that I might need to rob a bank to pay for my gas bill.

For some years now my legs have been boiling hot at night and the more hot they become the more they ‘jump’ (in other words, give me restless leg syndrome).  Some nights they drive me insane and sleep becomes impossible.  The only relief I’ve found is to get them cold, so I wrap 2 gel packs from the freezer inside a pair of socks and tie them round my tootsies.  Ahhhh, sweet relief.  Why does no-one make socks that contain pockets for ice packs?  They’d make a killing.

Photo of hot feet
My 9 months of Greater Trochanteric Bursitis (or hip pain to you and me) might have settled down somewhat, though is by no means ‘better’, but I’ve now started with knee pain.  It’s on the inside of both knees and feels like burning ligament strain.  I made an appointment to see my local podiatrist, who has referred me to Orthotics to have some custom insoles for my shoes made as my current off-the-peg insoles no longer seem to be working to keep my feet in a neutral position, but I want to know what’s actually going on with my legs.  No-one I see seems to be able to tell me.  So in desperation I found a private biomechanical clinic in a nearby city who deal mainly with professional athletes and dancers and have made an appointment to go and see them.  They offer a scan of your gait, ie how you walk, so I’m hoping this might shed some light on what my joints are doing as I move.  They also make their own braces, custom made for the client, which is what I feel I need.  My initial appointment is next week so I’ll keep you posted.

It was encouraging, this week, to see mast cell disease featured in the UK national press, see the article here.  Chloe has Enteric Mastocytosis, but also has Ehlers-Danlos Syndrome and POTS.  It’s common to see EDS and Mast Cell Activation Disorder together, but EDS and Mastocytosis together appears to be much more rare.  I was particularly fascinated to see Chloe had worn a particular necklace for years, then suddenly become allergic to it.  That’s what happens with me and drugs.  I took paracetomol (tylenol) all my life until I was 40 then …….. BAM!…….had anaphylaxis to it.  Doctors find this almost impossible to get their heads round.  They think if you haven’t reacted to a drug in the past it’s “safe”.  Dream on!  I can also relate to her feelings giving her a mast cell reaction.  If I get stressed or upset I break out in hives all over my torso and am ill and exhausted for days afterwards, which is why I won’t tolerate shitty comments or arguments here on my blog.

I’ve just finished watching Teen Mom OG and now Teen Mom2 is back on British TV.  It’s my guilty pleasure and I’ve watched it since 16 & pregnant.  My other guilty pleasure is the Real Housewives, though I limit myself to Orange County, Beverly Hills and Miami.  Shhhhhh don’t tell anyone ;-)  The housewives just goes to show that money doesn’t make you happy, but at least you’re miserable in comfort and don’t have to worry about how you’re going to pay your heating bills!

 

 

I can’t find the words

There’s a link doing the rounds on Facebook about a gay couple – one has HIV and the other severe ME.  The HIV partner says that he’d rather have HIV than ME any day of the week because he’s less sick and disabled by his illness than his parter.

I don’t like comparing diseases.  If you suffer from something then you suffer.  End of.  But I can understand why people with ME compare their illness to other diseases.  It’s because:

  • ME isn’t taken seriously and
  • There is nothing to see and
  • There are no words to describe how sick you feel.

There is an abject lack of compassion and understanding for ME patients both within the medical world and the public that just isn’t seen in any other disease.  In fairness, I think the ME/CFS community often fuel this.  The only stories you tend to read about ME/CFS in the media are about mildly affected patients who tried some wacky diet or therapy and are now cured and have re-started their mountaineering hobby.  The fact they obviously didn’t have ME in the first place and were mis-diagnosed seems to skip reporters by.  I can’t even read this shite any more because it makes me want to kill someone.  You hear virtually nothing about severe bedbound ME patients because they’re too sick to give interviews, don’t recover to any significant degree and the media don’t like stories with no happy ending.

I get frustrated that people with ME share links and information about ME on ME forums and with their ME friends on Facebook which is such a waste of precious energy.  ME sufferers already ‘get it’!  If patients want the public to ‘get it’ they need to spread the word outside the ME community not within it!  Which is why I don’t tend to write a huge amount about the politics of ME here on my blog.  The only people reading my posts are other sick people, who already understand the situation but are too ill to alter it as it needs Government led change.  Bravo to people like Jen Brea who is trying to alter the situation on a massive scale – I don’t know how she does it as poorly as she is.

When I was bedridden there wasn’t much to show for the fact that I was at death’s door.  I was under-weight because I could no longer chew solid food.  My speech was affected.  My hands and feet turned in like you see in head injury victims and I was very pale, but other than that there was nothing much to see.  Even when critically ill I didn’t really “look sick”.

When Doctors would ask me how I felt I, with all my education and articulate expression, could find no words to explain my symptoms.  Exhausted just didn’t cut it.  Nauseous didn’t cut it either.  Neither did weak, or ill or………….even now I can’t think of how to describe severe ME to anyone.  Should I have to?  I liken my nausea to that experienced by cancer sufferers undergoing chemotherapy, but they don’t have to describe their nausea to anyone.  The second someone says they’re having chemo everyone ‘gets it’ and understands how dreadful the treatment can make you feel.  But with ME we’re made to try to put into words symptoms which simply can’t be adequately described.  I felt so ill I would wake every day in awe that I could feel that bad and still be alive – it still amazes me to this day that my body pulled through.  So when ME is trivialized in the media as an illness which “leaves you exhausted” I just despair.  If being tired was all I had to worry about I’d class myself as one very lucky individual.

I don’t know the answer as to how to get across to the general public how ill ME can make you feel and, although I don’t personally find it helpful to compare our disease to others, I can understand why ME sufferers do it.  They’re desperate for legitimacy and a modicum of understanding of their suffering.  ME has been compared, by leading doctors in the field, as similar to the end stages of heart failure, cancer and AIDS.  Note the words “end stages”.  By this time people with advanced heart failure, cancer and AIDS are dying and will soon be out of their misery.  The difference with severe ME is that this horrendous pain and suffering goes on for years, decades, and that’s what makes it so unbearable.

I’ll leave you with another link doing the rounds on Facebook from Healingwell.com which I found particularly pertinent, especially with the current demonization of sick people here in the UK.  For all the times I fake being well I deserve an Oscar.

Healingwell.com

 

Why?

My post last week about the fact that the majority of my family and friends ignored me when I was severely ill with M.E. made me think about why.  If I post on Facebook about falling down the stairs, dislocating a rib or cutting my finger open I get lots of “ow!” comments and lots of “hope it’s better soon” comments, but never a single word is spoken about the fact that I have been chronically ill for the past 21 years.  I find exactly the same attitude in the medical profession – I’ve had more care, understanding and compassion regarding my Ehlers-Danlos in the five years since diagnosis than I have in the previous two decades of living with ME, even though the ME nearly killed me and the EDS is currently just a frustrating inconvenience.

What is it about chronic illness that fosters such a lack of care and empathy?  When I think about this question I genuinely can’t come up with a good answer.

  • I think chronic illness scares people.  If it can happen to you then it could happen to them.  If they pretend it’s not happening then it won’t happen to them.
  • My cousin once apologised for ignoring me when I was bedridden.  Her excuse was that “I didn’t know what to say to you”.  We all know that acute illness or injury is a short lived thing which you’ll get over.  It’s easy to send “get well” cards if you’re actually going to get well……..it’s harder when you’re not.
  • Healthy people are busy.  This seems like a lame excuse, only now I’m partially improved my life is HECTIC.  It’s not so busy I would ever ignore my sick friends, but that’s because I’ve been where they are and have huge empathy and compassion for their situation.  I wouldn’t have had this if I’d never been sick and simply would have no understanding of how hard and lonely living with chronic illness is.  Sheer ignorance of life with chronic illness is behind much of healthy people’s behaviour.
  • People assume you don’t need them.  They presume that someone else is looking after you and if they’re honest they’re often glad someone else is looking after you because it means they don’t have to.  The trouble is, when all your friends and family assume that someone else is looking after you it can mean that no-one is looking after you.  And even when you do have caring people looking after you, you still need other company sometimes – much as I love my parents when you see someone every day you kinda run out of conversation.
  • Impotence.  The lack of ability to fix your situation is behind a lot of behaviour in the medical profession.  Health care staff are trained to treat people and when they can’t do that they’re stuck for ideas.  Brutal as it sounds, health care staff also work to budgets and would rather spend their time and money on people they can cure than people they can’t realistically do anything for.  Which is why I don’t see Doctors any more unless I know there is something concrete they can do to help me – I’m not wasting my time and energy and their time and resources.
  • And of course there are those people in our lives who simply lack any form of empathy and understanding.  Or who think we’re malingering.  Or who are just in denial that we’re sick at all.

None of this is an excuse for ignoring, or treating badly, people who are chronically ill.  But it is what it is.  Being angry and bitter about it only hurts you – it has no effect on the people you’re angry and bitter towards.  There are some members of my immediate family that I will never forgive for the way they have treated me since I’ve been sick but I don’t sit and stress over it.  I have nothing to do with them and that’s the end of that.  Other people I’m polite to but when they find themselves in any kind of difficulty I’m not going to be the one to help them, even if they ask (which a couple have had the cheek to do!).  On the other hand, the few people in my life who have shown me care and compassion have my 100% devotion.  I will do anything I can for them which, thankfully now I’m better than I was, takes all sorts of forms from doing my parents’ paperwork, to sorting out my friend’s computer, to shopping for an ill neighbour to taking my best mate out for lunch on her birthday.

You can’t change people so it’s pointless trying.  I educate people on my diseases if they ask and if they don’t ask they obviously don’t want to know.  Just so long as they don’t expect me to be interested in them when they get sick, which we all eventually do.

Weekly roundup

You must be sick of hearing me say it, but my life seems like a run away train at the moment.  Caring for my parents feels like a full time job some days, even though they try to ask me to do as little as possible because they know I’m sick, bless them.  This week I’ve organized new doors to be fitted throughout their apartment, which now need painting.  I’ve arranged for Mum’s stair lift to be looked at as it had broken down, and then put a complaint together to the company.  I’ve also put a complaint in to the insurance company who didn’t mend their washing machine, even though they’ve paid on their policy for the past 10 years.  I’ve looked at their shower door which isn’t closing properly and contacted the manufacturer to sort that out.  I’ve bought and written 4 birthday cards and posted those.  And organized for a different electricity tariff which is cheaper than the one they’re on now.  Consequently I have done bugger all in my own house and am now out of clean undies having not had the time or energy to do any laundry ;-)

Wednesday was my dog Bertie’s birthday.  He was seven.  I adopted him when he was 2½ and can’t believe where the last 4 years have gone!  He had a lovely day: walks, tummy rubs, toys, extra food rations and was so shattered by 6pm he couldn’t wait to get on the bed for a kip ;-)

Photo of Miniature Schnauzer having a car ride
Yesterday was both my step-Dad and my step-Niece’s birthdays.  My niece was 18 and I was invited to her party last night but didn’t go – it’s all too much with the noise and bright lighting and the need to be perky and join in.  It would have floored me for a week and, let’s face it, my niece wouldn’t even notice I wasn’t there as she’d be having so much fun with all her friends.  I still feel guilty about turning down important events like these, but my health comes first because I’m the one who has to live with the consequences.  I am, however, taking my Dad out for lunch today so am looking forward to that.

I had a worrying brain fog event on Thursday.  I had to go into town for some shopping, then couldn’t remember where I’d parked the car.  I usually laugh off all the dippy things I do, but something like that is scary whichever way you look at it.

I have a new hair do :-)  As I wear my wigs all day every day they only really last about 8-10 months before needing to be replaced.  I really liked the pixie style I had last, but unfortunately that wig has been discontinued to I had to choose another one.  I’ve gone for Raquel Welch again as her wigs are so realistic looking, but this time an asymmetrical style: short over the ear one side and a very short bob on the other.  I really like it and will post a picture if I ever find time to take one!

Toni Bernhard posted a very pertinent article on her blog today which I wanted to share.  She’s much more magnanimous about the ‘advice’ offered to the chronically sick – I just want to scream and tell people to shove it where the sun don’t shine! ;-)  Nothing I eat, or don’t eat, is going to cure me people, get over it – I have.

 

 

 

Rip off Britain

I’m fed up of being ripped off and even more fed up of my vulnerable, sometimes a bit confused Mum & Dad being ripped off.

My parents live in an upstairs apartment and have a stair lift as my Mum can no longer manage the stairs.  At the end of the 12 month warranty, the company wrote to my Mum trying to sell her stupidly expensive insurance of nearly £200 ($300) a year for servicing and in case of breakdown.  The tone of the letter was worrying and implied if you didn’t take out the insurance the world would cave in.  I rang the company to discover she didn’t have to take out the insurance and could have the lift serviced for £70 ($110) a year which is what happened.  This week the lift, which is only 30 months old, broke down.  Mum rang the company who are charging her £150 just to come and look at it “because she isn’t insured”.   WTF.  They can spend an hour servicing it for £70 but are charging twice as much just to come and look at it now it’s broken down.  I did get quotes from two other companies, who would charge £55 and £65 respectively, but both their engineers were on holiday and couldn’t come out for at least another week which is no good to my Mum.  How can these people sleep at night?  They are dealing with elderly, vulnerable, sick human beings.  I will be complaining and will refuse to pay the bill when it arrives particularly as the bloody lift has never been right since the day it was installed.

My parents also have insurance to cover their washing machine, fridge/freezer and dishwasher.  They pay about £150 ($235) a year and have done for 10 years yet have never claimed on their policy.  This spring my Mum discovered a disgusting smell coming from her sink and to cut a long story short I found that the smell was coming from the drain hose at the back of the washing machine.  But the machine is integrated and the hose is moulded to the back, so I couldn’t fix it.  She is insured and got the company to send out an engineer, who didn’t even pull the machine out despite being told we knew what the problem was.  He ran the machine through a wash cycle, declared it working fine, said the smell was coming from the outside drain (in an upstairs flat?!) and left.  I then had to get a Bosch engineer out to fix the bloody thing, costing my parents £70.  Needless to say I have now cancelled the insurance and have made a formal complaint to claim the money back my parents paid for the independent engineer.

My dog Bertie is insured at a cost of £17.50 ($27) a month with Tesco.  I made a claim this year for approx £180 ($280).  I paid the first £120 ($187) due to excess charges, so Tesco only paid out £68 ($108) then put next year’s premium up by a whopping £244 ($380), getting back three times what they’d paid me.  I am now in the process of complaining to the Financial Ombudsman – being penalized for using a product for the very purpose it is bought is just bloody outrageous.  Do they give people who never claim a 2/3ds refund?  No they sodding well do not.

And now the Government want us to work another seven years, knowing there is more chance we will get sick as we age, yet not insisting the insurance industry cover us against illness until we retire.

I despair of the greed.  I despair of the Government who don’t seem to give a crap about the very people they are elected to “look after”.  I am ashamed to live in a country which allows its citizens to be treated like a commodity.   I feel sick at the way elderly people are looked upon as a “soft touch” there to be ripped off for another’s financial gain.  Do these people not have parents of their own?  Do they think they will never be old and losing their mental faculties?  At the same time I despair at the complacency of UK citizens.  Why don’t we complain more?  If every person who was ripped off by insurance took the complaint to the Financial Ombudsman the sheer volume would force them to act on a national scale.  Despite advertising on several sites about the PHI issue I’ve had one response.  One!  Come on Britain, stop acting like a bloody doormat and DO something.