Taking a break

Writing this blog is really hard work.  My hands and fingers are in splints daily, which makes typing difficult.  Due to my ME I have become dyslexic so spelling and sentence construction some days is nigh on impossible.  I have numerous cognitive difficulties, which makes every thought hard work.  I don’t sleep and am so exhausted most days I have no idea how I get through.  I’m in pain, every day, and am allergic to all pain relief.  I live alone with zero help and little money.  On top of all that I’m caring for my very ill Mother and my Dad who’s going dotty, again with no help from anyone.  Life could be easier.

However, I try to write at least 2 posts per week, even though that often means I have to wear dirty clothes because I don’t have the time and energy to both write and do laundry.  Or I eat a bowl of Cornflakes for lunch as I don’t have the time and energy to both write and cook.  All of my recipes are free for you all to use.

And while writing this blog is therapeutic for me, I do it on the whole to help other people.  People like you, the reader.  Because I don’t want you to be floundering around in the dark like I did.

I am British, I am Northern and I am working class.  I am blunt.  I say this over and over and over again.  Yet it still seems to surprise people when I am just that……blunt.  I am never unkind, but I just tell it like it is with no frills.  You either appreciate this or you do not.  If you don’t like it write a blog of your own and stop reading mine.  Just, please, don’t whine at me for just being me.  My life is hard enough without logging on to my blog to find someone has had a go.

I’m going to have a short break from my blog because I’m really, really tired at the moment.  I’ll be back when I’ve rested up.

 

“Do I have a histamine problem?”

“Dear Jak.  I have x, y and z symptoms.  Do you think I have a problem with histamine?”  This is such a common question I thought I’d write my answer in a post to save re-typing it ;-)

I’m not a Doctor and even if I were it would be unethical for me to diagnose someone with any medical condition over the internet, bearing in mind I don’t have access to that person’s medical notes, don’t know their full medical history, haven’t viewed their test results and have never met or spoken to them.   Trust me when I say I totally understand the isolation and frustration in being sick and not being able to work out what’s wrong, especially when every Doctor you visit either says nothing is wrong or you get a different diagnosis depending on who you see, but following a total stranger off the Internet’s opinion isn’t the answer.  If you have a suspicion that you have a particular illness you have to find a Doctor who specializes in that condition and have it checked out.

Histamine seems to be a bit of fad at the moment with every Tom, Dick & Harry thinking they have a “histamine problem”.  There’s no such thing.  Histamine is only one of two dozen mediators (or chemicals) released by mast cells when they are faulty, or by the immune system when it  orchestrates an allergic reaction.  If you have obvious signs of histamine release, eg. hives, it is only part of a much wider disease process.  This blog discusses both Histamine Intolerance (HIT) and Mast Cell Activation Disorder (MCAD) because these are the problems I myself suffer from (for a brief explanation of both of these diseases see my ‘Guide to Mast Cell Diseases’ page).  I am clueless to any other diseases which affect histamine production, including allergies, auto-immune diseases or other types of inappropriate immune responses.

If you have chronic hives I’d say it’s likely your body is over-producing histamine, but the underlying reason for this could range from being allergic to dogs then petting one, to having life threatening Mastocytosis………and anything inbetween.  If you have gastro-intestinal symptoms you could be suffering from Coeliac disease……or indigestion…..or about 100 GI diseases/allergies/intolerances inbetween (not to mention all the non-GI diseases such as Ehlers-Danlos which also affect digestion!).

Cartoon of fortune tellerI totally understand my readers needing help in figuring out their issues and am always more than happy to answer any specific questions about my experience with either ME, EDS, HIT or MCAD and to point readers in the direction of sources of further information.  But I’m not about to guess about a total stranger’s health based on a short paragraph they’ve written on my blog.  My advice to anyone who thinks their body is over-producing histamine is to please see an allergist or immunologist and get some proper allergy testing done.  Get your tryptase levels measured to rule out Mastocytosis.  Get your DAO levels measured to rule out Histamine Intolerance if food is your biggest trigger (as it was mine).  Or if your symptoms are more widespread find a Consultant clued up in mast cell activation disease and who can properly test your histamine, prostoglandin, heparin, chromoglanin A and leukotriene levels (mast cell disease is so much more than a simple histamine disorder).  You can’t simply guess what might be wrong with you and self-treat in the hopes you’re doing the right thing.  I worry about some of my readers who are following hugely restricted diets because they might have a problem with nightshades, and they might have a gluten sensitivity and they might have a dairy intolerance and they might have an oxalate problem and on top of all that they might have a histamine problem – they end up with diets so limited they’re much more likely to have some serious nutritional deficiencies which are going to make them ill.

I do know how hard it is to have HIT or MCAD diagnosed, particularly in the UK, but these are potentially life-threatening illnesses – you cannot treat them on your own.  MCAD has serious implications for things like CT/MRI scans with contrast dye, anaesthesia for operations, dental procedures and drug prescribing, plus complications such as osteoporosis and GERD which can lead to stomach and oesophageal cancer – it’s not simply a matter of restricting what you eat (if only it were that easy!).

 

Weekly roundup

I can’t believe we’re in February already – where the hell did January go?!  Healthy people look at me pityingly and ask “what do you do all day?” and I have to stifle a smile.  My days are so full and so hectic I’ve simply no time to be bored.  What regular people don’t realize is that my day finishes at 3pm, so in the 8 hours I’m active I have to fit in: preparing breakfast, lunch and dinner; writing my two blogs; seeing my parents; medical appointments (mine, my Mums and my Dads); taking the dog out; laundry; my Camera Club; feeding the wild birds; keeping up with my friends; bathing, and a million and one other things which this week has included another Vet visit, some town shopping, my monthly car checks (eg oil, water, tyres), checking my scooter tyres and giving that a wash down, a visit to the Solicitor to change my will and trying to sort my kitchen out now the painting is nearly done!  On top of all that I have 121 emails sitting in my inbox I keep meaning to do something about; I still haven’t managed to shorten my new front door curtain which has been in situ since last August, and I have a dustbin bag of filing I haven’t managed to do since February last year.

The good news is that Bertie is doing brilliantly after being placed on Gabapentin for his back pain and his acute colitis seems to be under control.  The bad news is the bill after just one Vet visit was £177 ($270).  I nearly freakin passed out in shock.  He is insured, so I’m hoping I can claw at least some of the money back though I still have a £60 ($90) excess.

As regular readers of my blog will know, my best friend fell out with me last year.  She was executor of my will, my legal power of attorney in case I become mentally incompetent and was also a beneficiary of my estate.  So this week I’ve had to change things.  Just making a small alteration to my will cost me £180 ($274).  I had no clue it was going to be this expensive and had only managed to save £100 – I’ve no idea where the other £80 is coming from.  I couldn’t make a change to my Enduring Power of Attorney because the Government, in their wisdom, changed the rules and now you have to make a Lasting Power of Attorney, cost of which is £800 ($1,200).  WTF?!!  As I said to the solicitor, if I had £800 going spare I’d treat myself to a holiday being as though I haven’t had one since 1996.  So all I’ve been able to do is revoke my current Enduring Power of Attorney, which means I no longer have someone to make health and financial decisions on my behalf should the need arise, which is all a bit worrying.  The solicitor did tell me I can download the Lasting Power of Attorney forms from the Government’s website and do it for free myself, which is what I’ll have to do, but it’s extremely complex and I swear the forms are thicker than the phone directory – it’s yet another job I don’t have the time or energy for (let alone the mental clarity).

On to other news.  I slipped on the ice and fell on my right hip which has taken 7 months to heal from my last fall, bugger!  I also had a really horrible day on Wednesday with some serious gut pain.  It was very low down and felt like period pain but wasn’t, so I’ve no idea what that was all about.  Yesterday I dropped my TENS machine when I went for a pee and it’s now not working.  I rely on it totally for my back pain and I can’t currently afford to replace it.  I need a lotto win, pronto!

I got absolutely nowhere in last week’s photo competition at my Camera Club.  I love this picture and couldn’t understand why it had done so badly.  I asked our Club Chairman for some feedback and disagreed with every criticism he made ;-)

Rutter Force, CumbriaThis post sounds really whingy but I’ve actually had a good week overall!  I admit to having had enough of the winter now though and am ready for spring to arrive – only another 2 months to go ;-)

The North/South Divide

I’m warning in advance that this post is going to be a bit ranty.  And I apologise to my overseas readers that this topic isn’t really relevant to them, though I’m sure those in rural areas will be able to relate.

Health-care in the UK is a post-code lottery.  If you live in London, where there may be 5 superb hospitals in a 3 mile radius you’re going to receive excellent specialist care particularly for supposedly “rare” conditions like Ehlers-Danlos or Mast Cell Disease.  There is a brilliant EDS unit at UCLH which deals with everything from joint pain to gut problems to autonomic issues and which recognises the link between EDS and mast cell disease.  Unfortunately for me it’s 300 miles away (7½ hours in a car on a good day).  It does have an in-patient unit, but you have to be well enough to a) get there and b) take part in their rigorous physiotherapy programme.  I have M.E. and wouldn’t be accepted.  I am not only geographically discriminated against, I’m also discriminated against because I’m “too sick”.  Make of that what you will.

For the most part, the north of England has shockingly poor health care particularly if you live in a rural area.  I live in the second largest county in England, and because of its large surface area it’s sparsely populated.  This makes for a lovely, peaceful existence and the chance of dying from treatable diseases.  My nearest ambulance station is 7 miles away.  The problem is they cover a radius of approximately 20 miles in all directions, including the M6 motorway where there seems to be a crash every other day.  If you have a heart attack you just have to hope the ambulances aren’t already on another visit, because if they are you’re in trouble.  The next nearest ambulance is 30 miles away and by the time it gets to you it’s too late.  Even if the local ambulance is sent to you, if you live 20 miles away up the fells your chance of survival is zero to none, particularly in winter when the roads are snowy as rural roads aren’t gritted.   We do have an air ambulance, which is funded solely by charity donations – if they don’t raise enough cash it can’t even get airborne.

My two nearest hospitals are both in “special measures”, which means they are so dire the Government has had to step in to run them.  They have a habit of killing people unnecessarily.  There are no specialist services for people with EDS and they’ve never heard of Mast Cell Activation Disorder.

My nearest “good” hospital is 90 miles away across the Pennine fells in Newcastle, the main road to which is closed every other week in winter.  When I had my spinal surgery there my parents couldn’t visit me for 3 days due to snow – it was tough being 16 and having major surgery without my Mum’s support.  Even in Newcastle there are no EDS specialists and the Immunologist I’ve seen for my M.E. doesn’t believe in MCAD.

For those living in Scotland or Northern Ireland the situation is even more desperate.  I read on the EDS UK’s Facebook page last week that a woman in Scotland had to travel over 500 miles just to be diagnosed with H-EDS, then of course received zero treatment, advice or support after returning home.  The North/South divide is well recognized as can be seen in this BBC report, yet nothing ever changes.

We pay our taxes and our National Insurance stamp just like everyone else.  It’s unacceptable that people in the north of the UK, and in particular rural dwellers, should receive such an appalling lack of health care.  If the government had their way they’d make us all move to urban areas.  The trouble with that being there would be no-one to run the farms which produce the milk we drink and the roast lamb we eat for Sunday lunch (agriculture is the no.1 employer in Cumbria).  And when all the city dwellers are stressed out there would be no-where to go for a relaxing weekend break, as all the rural B&Bs would be shut (tourism is the no.2 employer).  There would also be no-one to run our nuclear power stations, which are always sited in the countryside because city dwellers would protest too much if they were built there – who cares if there’s a 10 fold increase in leukaemia in northern rural children who live near Sellafield, just so long as Londoners are spared.  And there would be no-where to trial gas fracking or large scale wind farms if it weren’t for beautiful, unspoiled areas of countryside, not to mention absolutely no UK oil production which solely takes place in the North Sea.

If I were well I’d be leading a bloody revolt and I can’t understand why healthy northern people aren’t doing just that.

‘Psychiatric’ symptoms

To me, the word psychiatric conjours up emotional or behaviour problems.  For example, depression, anxiety, euphoria or behaviours seen in illnesses like schizophrenia where the sufferer hears voices or has uncontrollable rage.  However, in the medical profession the term psychiatric seems to encompass much broader symptoms eg. sleep disturbance, stammer, and cognitive issues such as problems with word finding or memory.  It’s always amazed me that sleep disturbance is seen as a mental health problem – your kidneys can go wrong, your digestive system can go wrong, yet the proufoundly complicated mechanism which renders us unconscious for large parts of the day isn’t allowed to and if it does go wrong it’s put down to stress or worry.  Bullshit!  The same applies to symptoms such as stammer.  I developed a stammer when I had very severe M.E. which, as I recovered, disappeared.  To me, these symptoms are neurological not psychiatric, so I’m not going to cover them in this post, and will concentrate more on emotional issues.

M.E.

ME is a neuro-immune disease, and like similar diseases such as Multiple Sclerosis, ‘emotional lability’ is listed as a symptom.  We don’t really understand how our emotions work, but it’s obvious that, although driven mostly by environmental factors such as grief, stress, getting upset due to an argument etc, they are also affected by non-environmental factors such as hormones and neurotransmitters.  I spent most of yesterday on the verge of tears purely because I was ovulating and am totally back to normal (whatever that means ;-) ) this morning!

I’ve suffered quite profoundly with emotional lability since developing M.E. and, for me, this symptom is influenced by activity and being ‘over-tired’.  On the rare occasions I go out for the whole day it will get to about 3pm and I start to feel really emotional.  It’s incredibly hard to explain, but I feel like I’m sobbing hysterically on the inside yet on the outside I appear perfectly normal.  My head starts repeating the words “I’m tiredddddd!” over and over in a whiny voice and I honestly feel like a little kid who’s way past her bed time.  My emotions are just raw and I feel completely overwhelmed by the world and everything in it.  If I go home and have a proper rest in bed I’m fine and back to normal a couple of hours later.  It’s bizarre to be so out of control of my feelings, but it’s just something I’ve had to get used to.

The other main symptom of emotional lability I get happens when I’m relaxing at night in bed.  I have the sensation like my stomach’s dropped, a bit like when you’re dreading an event or have just heard bad news – butterflies but with your heart in your boots.  I have no idea what this is all about, but it lasts about 30 minutes then, when I’m totally relaxed, it just goes.  It’s not pleasant but again is just something I’ve had to get used to.

Both of these symptoms can also appear when I’ve overdone it.  If I’m on the computer and my stomach suddenly drops, or if I’m out and I suddenly start to feel weepy, I know I’m past the time when I should have stopped and be resting.

There are lots of theories as to what causes emotional lability in neurological diseases, eg. adrenal dysfunction, sympathetic/parasympathetic nervous problems, but in truth no-one has a clue what’s going on.

Mast Cell Disease

Anxiety is a recognised symptom of anaphylaxis and is often the reason many people with mast cell diseases have previously been diagnosed with an anxiety or panic disorder or their symptoms labelled as psychiatric or “all in your head”.  The mediators released during a mast cell event, eg. histamine, cause blood vessels to widen.  This lowers blood pressure and the heart starts to beat more quickly in order to bring blood pressure back up.  This can trigger the flight or fight mechanism and quite severe feelings of anxiety and/or mimic a panic attack.

Mast cell mediators also directly influence neurotransmitters such as dopamine and seratonin, which amongst other things are involved in regulating our mood.  Histamine also causes our muscles to contract and it’s hard to feel zen when every muscle in your body is clenched!  There are several current research papers which are looking at the link between histamine release and severe psychiatric disorders such as schizophrenia and bipolar.

The first drug reaction I ever had in 1998 made me pace round my bedroom for hours, extremely agitated and highly anxious, acting like I’d totally lost the plot.  And when my mast cells really starting going berserk in 2012 I had severe anxiety after every food I ate and even after drinking a glass of water.  The anxiety isn’t mental or emotional, it’s purely physical and totally outside my control.  Steady breathing (in through my nose and out through my lips) does help, as does lying in a warm bath, but for the most part I just have to ride it out.  These mast cell reactions are really unpleasant and often my only way of coping is to tell myself that no-one ever died purely from feeling anxious.  Of course you can die from the other symptoms of a mast cell reaction, but that’s a topic for another day!

I’ve suffered from depression most of my life.  I didn’t have an easy child-hood and obviously as a teenager my low mood was put down to the legacy of that.  Puberty was tortuous and I used to wake every day wishing I were dead.  Hindsight is a wonderful thing, and I now know of course that with the changes in my hormones my mast cell disease would have been rampant (I developed migraine at 13 and my period pain was off the charts, both of which are symptoms of mast cell disease).   I saw a Psychologist when I was 18 and was put on an anti-depressant.  Luckily the Consultant chose Dothiepin, a tricyclic anti-depressant, which as a side-effect has anti-histamine properties.  It really helped and, along with the counselling, did me the world of good.

By the time I was in my mid twenties I no longer felt I had any unresolved emotional issues yet was still chronically depressed, albeit at a well functioning and low level – to see me you’d never know as I’m confident, chatty, and bubbly.   This isn’t forced, or a face I put on, I think I genuinely have this kind of disposition, it’s just that the depression was always there lurking in the background.  Depression runs in my maternal family and I just thought it was in my genetic make-up and something I’d simply have to put up with.

However, starting a low histamine diet, and taking antihistamines, has changed everything.  There are days I wake up in such a good mood it’s completely un-nerving as I’m just not used to feeling  happy for no good reason.  Of course, the peri-menopause has started and my wildly fluctuating hormones are buggering up my mood no end, but I’d hate to think how much worse my emotional health might be if my histamine levels were still sky high!

As I’ve mentioned before on my blog, I think I inherited both EDS and MCAD from my Mum and am convinced other members of my extended maternal family have mast cell issues, which largely manifests as panic and depression.  One cousin in particular has severe migraine disorder and chronic mild depression yet I can’t persuade her to try a low histamine diet or to try anti-histamines – you can lead a horse to water but sadly you can’t make it drink.

 

Pre a proper diagnosis, many people with M.E., EDS and/or MCAD have at one time or another been told their symptoms are purely psychiatric and may have been offered anti-depressants.  These can be mildly effective, as some help with pain and some have weak anti-histamine properties which unwittingly help with mast cell disease, but they’re a sticking plaster over the root cause of the problem.  You know yourself.  You know if you’re genuinely suffering from a mental health disorder, or whether there’s something else going on.  My bubbly disposition was in stark contrast to my chronic depression and I’m really very stoic and generally not prone to panic attacks or anxiety – there was something else at play, and from a very early age.  You’re not losing your mind, you’re not a hypochondriac and you’re not expressing “abnormal illness behaviour” – if you think you have a mast cell issue or something else causing your psychiatric symptoms keep pushing for an accurate diagnosis as the right treatment could change your life.

 

 

 

 

Odds n Sods

I can’t come up with an original Jak post for you at the mo because I’m too exhausted, but I’ve read some interesting articles lately (well, when I say read I mean skimmed through in a dizzy foggy haze!) which I thought I’d pass on.

Ehlers-Danlos

This link was posted on my Facebook wall by my lovely friend Daniel, who doesn’t have EDS himself and which goes to show how thoughtful he is to see this and think of me :-)  It’s about the celebration of our lives as disabled people against all the odds.

M.E.

The inspiring Jen Brea is currently at the Sundance Film Festival promoting her film-in-the-making ‘Canary in a Coalmine’ about the stark realities of life with M.E.  For anyone who wants to follow developments Jen has a Facebook page and Twitter feed.

I also loved the ME Association’s facebook status update this week:

MCAD

This new paper on Mast Cell Activation Disorder appeared in the Allergy & Clinical Immunology Journal (Vol 27 No.3) in September 2014 and was written by the excellent Dr Afrin.  I’ve copied all the symptoms listed in this article (see below) which can indicate MCAD and marked the ones from which I suffer/have suffered in red.  Out of the possible 143 symptoms associated with MCAD I have/have had 75 – on top of all my M.E. and Ehlers-Danlos symptoms.  When you look at it in black and white like this it does make me mad that I’m this sick and yet just left to get on with it – no consultant involvement and I maybe see my GP twice a year for a sick note for my insurance company and a repeat prescription!

Mast Cell Activation Disorder symptomsMast Cell Disorder symptoms2Mast Cell Disorder symptoms3

 

Weekly roundup

Apologies again for not posting anything new this week.  I’m so tired I can’t even think of a post let alone do one.

Bertie’s back is very bad and he’s pooped in the night 3 times this week which he’s never done before in his life.  He’s currently in too much pain to take for his morning walk, which again is unheard of, so I have a Vet appointment booked on Monday afternoon to discuss the situation.

During the next month my Mum has various doctor’s appointments for her heart and lungs – we’ve had two this week and there are another two coming up before the end of Jan.  She’s doing well considering, though still coughing up blood and no-one knows why.

In amongst all that I’m still decorating.  It’s making me feel like absolute crap though, very fluey and MEish, so this weekend I’m having a break from it all.

The past month or so I’ve been having a new symptom.  Been waking with totally numb hands which are covered in pins and needles, a bit like if you sit on them for too long.  As soon as I’m up and about it wears off, so it hasn’t been worrying me, until yesterday when it didn’t wear off and I had pins and needles the entire day.  It was quite painful and when I typed it was like someone was jabbing my finger ends with a hot needle.  Yesterday the pins and needles had spread up my arms to my elbows which kind’ve freaked me out a bit though I know in my heart it’s nothing serious.  I’m fairly sure it’s my upper back which causes me a lot of problems anyway and the main nerves to my arms are being squished overnight.  So last night I tried sleeping with my arms in a different position and at least didn’t wake in the night with no feeling in my hands and, although I’ve still got pins and needles today, at least they’re not as painful or widespread as yesterday.

My friend K is coming through for a visit tomorrow, so I’m really looking forward that :-)  She’s been on a rare week away (she has ME so doesn’t travel much) so I’m amazed she still has the energy for the 40 mile drive to my house (and the 40 mile drive home!).

Time to make some dinner as it’s now 6pm, even though I’m shattered and feel like crap.  These are the days I wish I had a Chef.  Scrap that, I wish I had a Chef every day, and a cleaner and a gardener and a painter & decorator and a handyman ;-)  I was too busy taking part in the Garden Birdwatch event (the world’s largest wildlife survey) this morning to prepare my dinner as I usually do, so it’ll be 5 minute egg noodles lavished with sweet chilli dipping sauce, 5 minute stir fry veg and some wild Alaskan salmon cooked straight from frozen, eaten in bed on a tray as usual.  Don’t let it be said I don’t know how to have a good time!!