One last day

I’m going to go off on a tangent unrelated to my health and this post might seem controversial, but as you all know I just say what I think based on my own experiences.

When I had severe ME in my late twenties I was told on two occasions that I was critically ill and might not make it through the night.  I’ve also suffered the loss of several friends and family members as outlined in this post.  For many years I’ve been acutely aware that life is fragile and it can be taken away at any moment.  It’s had a profound effect on how I live.

I love to watch Mediums on TV, like John Edward, but am amazed at how many times the people he’s reading are in tears saying “I didn’t get to say goodbye”.  While I totally understand this in very unexpected deaths, eg that of a child or younger adult, I’ve never really understood it when it comes to older people.  The second my parents reached 60 I started to prepare myself to lose them.   None of us live forever and the one certainty in life is that we’re all going to die.

If you have something to say to an older relative get it said.  I don’t really do gushy, but I always buy my parents lovely birthday and Christmas cards with verses in which tell them how much I appreciate and love them.  I also show how much I love them every day in everything I do for them.  How much more time do you think you’re going to have?  Every day when you say goodbye to an older relative realize it could be the last time.   If you don’t have the relationship you would like, fix it or let it go.  I let the relationship with my biological Father go when I was in my twenties, I’m at peace with my decision, and if he died tomorrow it wouldn’t even register with me.  Have no regrets that are going to haunt you when they’re gone.

My Facebook feed is full of people saying how much they miss their parents.  Every Mother’s Day, Father’s Day, anniversary of a death and birthday they post how much they are thinking about their departed relative.  I just don’t get this need to share grief with the entire universe.  Your parents are fundamentally the most important people in your life.  What do you think is going to happen when they die?  You will miss them every second of the rest of your life.  You will never be the same again.  Why do you need to tell everyone you know this?  Isn’t it bloody obvious?

I’ve been to lots of funerals.  The friends and relatives stand there and give glowing eulogies telling us all how special their loved one was and how much they meant to them.  I wonder just how many actually told the dead person while they were still here?  I really don’t think I’ll have anything to say at my Mum’s funeral.  She already knows how much she means to me.  We  often reminisce about her childhood and my childhood and our life experiences.  For sure I’m not going to stand there and make her out to be some kind of Saint because that she most certainly is not.  She’s a complex, flawed human being who’s made a ton of mistakes and some very poor choices, many of which have impacted my life in extremely negative and destructive ways.  Which doesn’t mean I don’t love her and won’t miss her every second of the rest of my life.  I just don’t need to tell a church full of people this because it’s only relevant to me and my Mum.

We all seem to sleepwalk through life and I don’t get it.  We always think there’s going to be a tomorrow.  A better day.  A day to sort things out.  But life isn’t like that.  Today is all there is.  Live it like it’s your last, or someone else’s last, because one day it will be.


Weekly roundup

On Weds I had my appointment with Mum’s GP about her drinking.  She agrees with me that there’s nothing much we can do if Mum doesn’t want to change.  We did decide, however, that being as though she hasn’t seen Mum for more than 12 months I should suggest that Mum makes an appointment for a general check-up and the GP will subtly ask about her alcohol intake.  Obviously Mum is going to lie, so I’ll go in with her as I usually do and say “well, actually Mum you do have at least 3 drinks per day” which is the doctor’s cue to discuss the effects of drinking with her medication.  I’m then going to make an excuse to leave (which is easy, I can say “while you’re chatting with the doctor I’m just going to go and check my podiatry appointment”) so that they can talk without me there, as I’m sure Mum won’t be open about the situation in front of me whereas she might be more honest with the GP.  It’s a gamble and might not work, but it’s all we could think of to do at this stage.

While I was there (it takes about 6 weeks to get an appointment with my own GP) I asked about a referral to the Rheumatologist about my EDS.  I haven’t seen anyone since I was diagnosed 5 years ago, yet my condition has deteriorated markedly.  I’d like to know exactly what’s going on with my pelvis/hips/knees and spine considering I’ve recently subluxed a rib for no apparent reason.  Don’t know if the local rheumy will be able to help (he has some knowledge of EDS but I’m not sure how much) but I can only try.  I was diagnosed by Dr Ho in Manchester but it’s 100 miles away and my local health authority won’t fund an out of county referral if I can see someone locally.

My reflux is still barely under control and I have wicked stomach pains right throughout my digestive tract every second of the day, so I also asked for a referral to Gastroenterology.  My GP was reluctant, though, and suggested I try yet another drug for my GERD first.  What’s the bloody point?  I won’t be able to tolerate it and it won’t help my GI pain one iota *sigh*.

Also on Wednesday I went through to the hospital to be fitted with my new bite guard.  It’s snaps over my back molars using a metal spring clip, and the bite guard is made of hard plastic.  Eugh and double eugh!  I think I’d rather risk jaw pain than risk the metal clip damaging my already fragile teeth and I can’t see me using it.   I find this with just about everything I try – it might solve one problem but leads to a whole other problem and is generally not worth the aggro.

Other than that my energy has been quite ‘good’ and I’ve managed to get through the list of jobs my Mum had made while I was away on my stay-cation.  I’ve found her a replacement cleaner after the last one quit so that’s a relief, though I still haven’t got one for my own home consequently I’m living in a bit of a pig sty.  Ah, it’s only muck and a bit of muck never hurt anyone ;-)

My exciting news of the week is that my Camera Club are holding an exhibition in our local library and two of my prints are included :-)


The Change

I’m acutely aware that I’m in a period of transition.  We talk a lot these days about teenagers, their hormones, moods and worries and the allowances we should make for their behaviour.  We talk endlessly about pregnancy and childbirth and the fact that our lives will never be the same again.  We also talk a lot about the elderly, their often increasing isolation and frail health and whether they’re receiving appropriate care.   What we don’t talk about, it seems, is the Menopause, at least not in public – it’s kind of the last taboo, yet it’s something every woman will go through and is as life changing as puberty.

Being chronically ill doesn’t stop us from going through all the same life events as healthy people.  What it does do, however, is make it harder.  Sometimes much harder.

Menopause can be rough – physically, psychologically and emotionally – even for healthy people.  We sweat, flush, can’t sleep, are nauseous, weepy, angry, exhausted, have palpitations, never know when Aunt Flo will arrive and our brain and memory go awol.  At the same time it happens at an age where we’re often looking after elderly parents or hormonal teenagers, grieving the death of our parents or facing ’empty nest syndrome’.  Whichever way you look at it The Change is just that……a life changer.

I never thought in a million years I’d be sitting at the age of 48 Googling “my elderly Mum is an alcoholic”.  There’s never been any kind of substance abuse in my family and it’s all new and scary.  The result of my search was confirmation of something I already knew………that I can’t change her, or cure her, or particularly help her.  But what I can do is help myself.  And I think that’s pertinent for all of us women of ‘a certain age’.  If society refuses to even acknowledge the toughest 5 years of any woman’s life, then we have to look out for ourselves instead.

We have to make sure we have hobbies and interests, particularly if we have children who are leaving home.  We need the distraction, the opportunity to meet new people and to have new goals and passions.  We have to make sure we have ‘down’ time, even if it’s just a soak in the bath for an hour with a good book or lunch out with a friend each week.  We have to learn to say “no”.  No Mum, I won’t paint your windows but I’ll gladly arrange for a decoarator to come and do it for you (which is the conversation I had with my Mum this afternoon!).  And all this is doubly, triply, important when we’re sick ourselves.  There are no medals for working ourselves into the ground taking care of others.  We too have lives to which we’re entitled.  To leisure time to which we’re entitled.  To time off to which we’re entitled.  And we’re also entitled to not feel guilty about any of it.

When we’re ill ourselves we simply don’t have the physical resources to be able to take care of others in the way we, or they, would like.  What we are often good at, however, is employing others to help – we’ve had to do it in our own lives which places us in a good position to help others.  My Mum’s cleaner quit recently and it took me all of 5 days to find a replacement.  She needs some plumbing work done so the plumber is going next week.  She wanted some new doors which were ordered and hung within a fortnight.  And all because these are people who have done work for me in the past because I can’t do it myself.  Being largely housebound I do everything online – groceries, shopping, banking.  And now my parents are unable to do these things it’s been fairly easy to do their groceries, shopping and banking online.  We sick people have skills we don’t even think about and which come in really handy when caring for others.

I’m finding middle age is a time to set new boundaries, both for myself and the people around me.  To recognize that my life is altering, I’m facing new challenges and responsibilities, and that I need to look at how well I’m adapting.  I’m finding a new maturity and re-evaluating my life and whether or not it’s meeting my needs as well as the needs of those I care for.  It’s a work in progress but so far I think I’m doing OK.

Today I finally feel like a grown up.  Even though I’ve lived independently since the age of 21 I’ve still always felt like someone’s daughter.  I’ve always had my parents for back-up, support and advice.  And it’s no longer there.  Now they turn to me for back-up, support and advice and it’s taken a lot of adjusting to.  But I know I’m up to the Change.



Drinking and the elderly

I’ve ummd and ahhhd whether to write this very personal post.  It seems disloyal to talk about my parent’s private life without their permission but at the same time this blog is about my life and their lives affect mine.  When I Googled my situation it appears to be much more common than I’d realized so I’ve decided to mention it in case anyone else is having the same issue.

As many of you know, my Mum is terminally ill with advanced heart and lung disease.  She’s hopefully not going to pop her clogs tomorrow but her life span is definitely shortened as her diseases are progressive.  She can now do very little for herself and spends her days sitting watching the telly or reading.  This is a choice, I hasten to add, because my Dad and I would willingly take her out but she’s never been particularly social and says she’s happy as she is.

She’s always liked a tipple but it’s been confined to a glass of wine with lunch and a whiskey after dinner, until the past 18 months when her drinking has spiralled out of control.   She’s switched to vodka, because it just looks she’s sipping on a glass of water, starts at 11am and just keeps going.  Each tumbler, I’d reckon, contains a double so by bedtime she’s probably had 6-9 shots of alcohol.

I’ve had to stop even trying to communicate with her past 5pm because she can’t even remember we’ve had a conversation let alone what was said.  I’ve spoken to my Dad about it and he just holds his hands up and says “what can I do?!”.

I’m so angry with her.  As if my bloody life isn’t hard enough, dealing with my Dad’s dottiness, my own health and her physical health, now she’s added yet another stressor to the equation.  I loathe speaking to her when she’s slurring her words and is obviously drunk, and when she’s all merry and life is tickety-boo I want to explode especially as her alcohol-soaked good mood is making mine and my Dad’s life a misery.

Part of me thinks if she wants to drink herself to oblivion be my guest.  Lets ignore the fact she’s on a dozen pills a day,  most of which shouldn’t be taken with alcohol.  However she now falls regularly, and has advanced osteoporosis, so you can guarantee at some stage she’s going to break a bone.  Then she’ll spend weeks in hospital, where she’ll go into abrupt withdrawal and be really ill and my Dad and I will have to do the 60 mile round trip every day to visit her where we’ll find her distressed and crying.  Then she’ll get home and be able to do even less physically than she can now, which means even more work for us.  Plus, if she has another heart attack the medics aren’t going to be able to give her the correct drugs in an emergency if she’s got huge amounts of alcohol in her system.

I want to scream at her for being so selfish.  She might be having a nice time but it’s no fun for the rest of us.  She’s either snappy, moody and belligerent or she’s zen and everything in the garden is rosy.  She’s forgetful, confused and disoriented and spends half the evening asleep.  My mast cells thrive on stress, so all this makes me sick too and I’m ill enough already.

It’s pointless me trying to talk to her about the situation because she either just laughs it off or will just drink secretly when I’m not there.  So I’ve made an appointment next week with her GP, who’s also thankfully my GP so knows us well, for a chat.  Something’s got to change, because I’m so resentful and seething about the situation, and let’s not forget menopausally hormonal, that one of these days I’m going to snap.

I sometimes wonder what more life can throw my way.



Lyme Disease

There has been huge excitement this week after the press picked up on the fact that a UK billionaire’s entire family has Lyme disease.  He then went on our most popular daytime TV show and gave a passionate and frank interview about the devastating effects of chronic Lyme, the lack of a good diagnostic test and the abject lack of treatment on the NHS.

The reason for the excitement within the Lyme community is that, in the past, anyone who has said the standard NHS Lyme test is rubbish has been passed off as a crank and anyone who has highlighted the fact that chronic Lyme exists at all, let alone to the extent that it does, has been dismissed as hysterical.  This week, John Caudwell exploded both myths and I’m delighted for the Lyme community that finally this awful disease has been given the recognition that it deserves.

The reason I’m covering Lyme in this post is that a proportion of people diagnosed with ME actually have Lyme disease, which isn’t routinely tested for in the UK (and even if it were, the test is notoriously unreliable).  ME is currently a diagnosis of exclusion and one of the first things doctors should exclude is Lyme.  Only of course they don’t.

I live in a known Lyme endemic area yet doctors and vets I’ve spoken to over the years are totally lackadaisical about Lyme, its effects and treatment.  They all seem to think it’s a tiny problem which can be cured with a couple of weeks of antibiotics, not a massive problem which if left untreated can be fatal.  It’s scary how complacent health professionals are, particularly in an area which is well known to have Lyme disease.  I dread to think how dismissive they are in cities where Lyme isn’t deemed to be an issue at all!

Lyme has always been thought to be a tick born infection, ie you are bitten by an infected tick and contract the disease.  However, the fact that John Caudwell’s entire family have Lyme turns this on its head.  The chances of them all being infected by tick bites is miniscule which leaves one wondering how they did all contract the disease.

From my own personal experience, Lyme has never been an avenue I’ve explored as my history didn’t fit the Lyme profile.  I was perfectly well one minute, caught a mild tummy bug, had an allergic reaction to a drug, and never recovered from either.  At the time I was working on a cruise liner in the middle of the Atlantic ocean and, as far as I’m aware, ticks don’t live in the sea.  If ME had a poster child I’d probably be it.

I was bitten by a tick a couple of years ago which had crawled off my dog and on to me, so I did ask for an NHS Lyme disease test just to be on the safe side which came back negative.  My symptoms haven’t increased since the bite, and I’d been ill for 20 years before it, so I’m still as certain as I can be that Lyme isn’t an issue for me though it can never be fully ruled out until a better test is used.

Of course if it turns out Lyme can be contracted through other means, eg person to person contact,  it’s an avenue we might all need to explore.  For more information on Lyme head over to Lyme Disease UK or Lyme

Once more unto the breach dear friends

Which is a quote from Shakespeare as men prepare to go into battle and is kind’ve what my life feels like much of the time ;-)

I haven’t been feeling great for days with worrying abdominal pain, nausea and a head even more weird than normal.  Went to sleep last night and woke an hour later with wicked stomach pain.  I tried to pay no attention but it wasn’t for being ignored, so at midnight I admitted defeat, got up, put my TENS pads on and listened to my talking book for distraction.  The last time I looked at the clock it was 2am but I must finally have gone off to sleep…………..only to be woken at 4.20am by the bloody dog on the farm next door barking its head off (I’ve been in a battle with the Environmental Health Dept for the past 3 years who seem powerless to stop the dog woofing at all hours of the day and night).  The last time I looked at the clock it was 5am, so I must have dozed after that and finally woke at 7.30am.

I went for a wee…………and discovered I’d started my period which is a week early.  To be honest I’m relieved, because at least the abdominal pain and nausea of the past four days can be explained.  Starting with period pain on day 17 of your cycle though is rude.

My 2 week stay-cation is now over.  I’ve loved every second of it and to be honest only really got into the swing of properly relaxing this second week.  It’s been fab to not have to cook, though I am now missing fresh food – woman cannot live on frozen dinners alone, at least not this woman ;-)  Stopping in bed every day til lunchtime has also been gorgeous and I definitely feel more rested.

I’ve had some time to update my blog a little and have added two new pages – a Guide to EDS and a Guide to ME to go alongside the existing Guide to Mast Cell Disease.  This is a blog, not an information website, but many of my visitors have never heard of EDS or ME so at least these pages give them a short intro.  I’ve also added some new links to the VIP section, which contains some of my most popular or informative posts.

As mentioned in this weekly roundup post Ronnie Campbell MP is trying to campaign for increased EDS services in the UK and a petition has now been set up online to try and force the Government to do something about the abject lack of services for anyone with Ehlers-Danlos in Britain.  PLEASE SIGN THE PETITION, share on social media and get your friends and family to sign it too!  Thanks :-)

Update on my recent biomechanical assessment for shoe insoles: as regular readers will know I paid to have a foam mould of my feet and some custom insoles made.  Only when they arrived they were just regular insoles in a box.  I paid £40 for them, but when I looked them up online could have got them on Amazon for £20!  I rang the woman who did my assessment and she said “I didn’t want to go straight for moulded insoles because if you couldn’t wear them it would be a waste, so thought we’d try these first and if they go OK then we can have the moulded ones made.”  Only she made the decision without involving me.  I had a look at my receipt and it says “moulded insoles, £40” so she’d diddled me out of money.  What the hell is it with people these days?!

I’m still waiting for an orthotics appointment to have my feet moulded on the NHS, but if they only offer hard insoles they’ll be no good because of my delicate skin.  If they can do moulded softer insoles though I’ll try those.  Not sure how long the waiting list is – usually I get orthotic appointments straight away, but the request was put in 6 weeks ago.  If I don’t hear soon I’ll have to chase it up.

Well, I’m icky so I’m running a bath.  I love bathing and just wish I had the energy to do it more often ;-)




Jaw pain update

I had a follow-up appointment with the Oral Surgeon on Wednesday about my jaw joint pain.  I obviously grind and clench my teeth in the night and because of this, and the fact I sleep on my side and my slack ligaments don’t hold my jaw in place, I often wake with wicked stiffness and jaw pain which shoots up the side of my head and causes migraines.   So the Consultant suggested I try a bite guard.

Despite several attempts, I haven’t been fitted with a guard I can wear – they all make my teeth and gums throb so much that the pain actually wakes me up.  I think it might be because of my dermographia, ie I get swelling and hives if I ever wear anything tight.  So on Wednesday I had yet another mould of my bottom teeth made and we’re going to try a different type of bite guard – one that sits on the back of my teeth apparently and just clips over my molars at each side.  However it’s made of hard plastic so lord knows how that will go.  I don’t hold out much hope if I’m honest and if it doesn’t work this time we’ve agreed to just leave it because nothing much more can be done.

The member of staff who has helped with two of my teeth moulds remembered me (I’m hard to forget ;-) ) and asked me lots of questions about EDS and mast cell disease.  So I wrote down my blog address and hope she reads it – I do try and educate medical staff about my so-called “rare” diseases if they seem even the slightest bit interested.  If other patients receive better medical care because staff are more informed than all the effort which goes into my blog will have been worth it.

While I’m on about teeth, I thought I’d recommend my toothbrush to all you thin-skinned EDSers out there.  I already have quite severe receding gums simply because the skin is disintegrating.  Dentists, I’ve found, struggle with this.  99% of the time the patients they see with receding gums have peridontal disease – in other words they’re eating rubbish and cleaning their teeth badly – and my dentist at least seems to have difficulty accepting that my receding gums are genetic and nothing to do with whether or not I floss.  Which I don’t by the way.  My Dentist told me to floss, even if my gums bled, because they would eventually harden up.  Only of course they didn’t.  They just bled even more.  So I stopped with the assault and it helped.  I now brush gently, with a soft toothbrush twice a day and rinse with an alcohol-free mouthwash which I suck through my teeth so it gets in the hard to reach areas.  It’s the best I can do in a bad situation.  Anyway, I digress.  I can highly recommend the Precision soft toothbrush by Sensodyne for anyone with sensitive teeth and soft gums.  I love mine.  I brush from the bottom up on my bottom teeth and the top down on my top teeth, rather than going in circles or up and down simultaneously so as not to push my gums even further away from my pearly whites.  I miss my former electric toothbrush it has to be said, but it didn’t do my teeth or gums any favours.

It’s rare I feel middle-aged, the exception being anything dental.  The fact I’ve recently lost a tooth, for good, still horrifies me and now not being able to eat ice cream, or drink cold drinks (even swishing with my mouthwash is painful), or smile when it’s windy due to gum recession causing tooth sensitivity is quite frankly shit.  I do also worry about losing any more teeth, because if I can’t even cope with the pressure of a soft plastic bite guard there’s no way on earth I’d cope with dentures!

Luckily for me I still only feel about 34 in my head.  I liked my mid-late thirties – nothing had fallen apart then and I still had my own hair and teeth ;-)