Peri-menopause: I have no words!

Soooo, I started my period today.  It’s day 25 of my cycle.  For the first three months of this year I was back to a 28 day cycle, but the last two months I’ve been down to a 25 day cycle, just to keep me on my toes.

Yesterday I felt OK(ish).  I was extra tired, had cramps and (TMI warning!) my bits were sore because the environment ‘down there’ isn’t as moist as it used to be and my undies chaff, but I still felt well enough for a potter round a nearby plant nursery with my friend.  Went to bed last night and all was fine.

Woke this morning at 5am, which is ridiculous.  So I put my talking book on (Michael J. Fox’s memoir ‘Lucky Man’ which discusses his early onset Parkinsons Disease) and must have dozed back off because the next thing I knew it was 7.30am.  Now that’s more like it.

Got up to feed Bertie, made myself a brew, and went back to bed for Bert’s morning tummy rub and to ‘come to’.  But by the time I reached the top of the stairs I knew something was amiss.  I started to sweat.  Everywhere.  It ran in rivers off my head and down my back.  And then I felt all the colour draining from my face and the world started to swim.  Hmmm, I think I’d better lie down before I fall down.  I collapsed onto the bed like a rag doll.  Bert nudged me for a bit then decided he obviously wasn’t getting his tummy rubbed and promptly went to sleep.  Typical bloke ;-)

I felt horrendous and like I was going to pass out, even though I was lying down.  I have a ceiling fan above my bed, so I turned that on.  It felt lovely and cool on my skin, but poor Bert started to shiver, so I covered him with my half of the duvet.  I also had god awful period pain and my hip bones felt like they were on fire.

I keep a blood pressure monitor under my bed, so I fished it out and took a reading.  79/45!!!!!  And my pulse was 43.  WTF?!

I then realized I needed the loo.  Urgently.  As I sat on the throne, sweating like a roasting hog, I didn’t know whether I was going to poop, puke or pass out.  This is when living alone can be quite scary.  For the next hour I staggered between my bed and the loo, with horrendous diarrhea and chilling sweats.  Even my lips were white and I couldn’t sit upright without wanting to pass out.

Then my period actually arrived and over the next two hours things mercifully started to calm down.  I put my TENS machine on both my back and stomach, so the cramping pain lifted slightly (though as I’m typing this I still feel like someone is inside my uterus with a blow torch).  I managed to have a drink.  And my BP came up to a more respectful 104/54 (which admittedly is my usual BP for when I’m sleeping, not awake and upright).

It’s now evening and I’ve finally managed to eat something.  I still feel rubbish, but it’s a ‘normal’ period-induced rubbish, not the I-think-I’m-about-to-die rubbish I felt this morning.  I’m going to run a bath now because I feel truly icky – I just hope the heat doesn’t send my BP plummeting too far again.

I have no idea what this was all about and I hope it doesn’t happen again any time soon.   When is the menopause going to happen?  When?!  I just want my periods to be over with because all this malarkey for the past 36 years has been like some kind of torture!

 

Random stuff

I know, it’s a rubbish title, but it’s late and I don’t have any brain cells left to think of a better one ;-)

I’ve not done a “weekly roundup” post for a couple of weeks because not much has been happening.  That’s OK by me.  I like boring because it means no new shit has hit the proverbial fan and life is just plodding along.

I made the mistake in my EDS update post of bragging that my wrists were good and I hadn’t had to use my braces this year.  Why do I say stuff like this?  Why?!  The Gods were listening weren’t they, sneakily little critters, and this week my right wrist is killing me.  So I’ve had to wear my brace.  Which is OK when I have my long-sleeved t-shirt on, but my dwindling hormones mean that as the evening progresses I get hotter and hotter and am typing this in a cami top and my undies – if I wear anything else I’d internally combust.  So I have to wear my brace over bare skin which means this happens:

Dermographism Flippin’ itchy dermographism.  I actually had no idea there was a pattern on the inside of the brace which has caused the little white bumps, and the line up the middle is the join in the fabric.  FFS!  So the brace has had to come off and the Sudocrem has had to be slathered on.

I’ve had a few more photos accepted at iStock – you can see my portfolio here.  I’m now waiting for a new batch of photos to be accepted, which takes an entire week.  Employ more staff for heavens sake, it’s not like Getty can’t afford it!  I have had another sale on Redubble too, so that was fab – it’s weird to think that someone in America is walking around with a picture of my little Bertie as the skin on their iphone :-) .  You can see my stuff for sale here – all the images can be bought as cards, stickers, posters, laptop skins, phone skins, and even leggins, scarves and duvets!  I have a similar UK based site here.

I was watching TV this morning and the BBC were doing some cookery thing with celebrity chefs, one of whom made a yeast free pizza base with flour and yoghurt.  Obviously yoghurt is out, but Quark cheese is very similar both in taste and consistency, so I’m going to give it a bash and see what happens.  Watch this space.

I shall leave you with the following quote Louise from over at Divorced, Diseased and Dangerous, shared on her Facebook wall today.  Priceless ;-)

Dr Seneviratne Lecture

I was diagnosed with MCAD and HIT by Immunologist Dr Seneviratne who, IMHO, is the only person in the UK to see if you have suspected Mast Cell Activation Disorder.  He gave a lecture at EDS UK’s 2014 conference on mast cell disease and histamine intolerance and the link to EDS and other conditions such as POTS, and EDS UK have now placed a video of the lecture in the member’s section of their website.

Below is a summary of the salient points of Dr S’s talk, most of which were discussed with me at my appointment with him in 2013.

The immune system is made up of 3 components: white cells, antibodies and complement (which helps both the white cells and antibodies to work).  Mast cells are a type of white cell which, historically, the body used to fight parasites.  However, in modern times we now come into contact with very few parasites and the mast cell hasn’t got much to do.  Consequently in some people it can start to misbehave, reacting to things it shouldn’t because it’s basically a bit bored (my words, not his!).

As an immunologist Dr S worked predominantly with people who had either allergies or immuno-deficiency, ie the immune system was having an IgE reaction to things like animal dander/pollen/nuts or under-reacting to things it should be fighting.  However, he kept seeing patients who had immune reactions, particularly to foods, chemicals and drugs, but who didn’t fit the diagnostic criteria for either allergy or immuno-deficiency.

These patients were usually diagnosed with multiple chemical sensitivity but most doctors believed the symptoms were psychosomatic as conventional allergy tests showed they weren’t actually allergic to anything, with normal IgE results, normal tryptase levels and a normal amount of mast cells.  The mast cells were, however, obviously ‘twitchy’ and reacting willy nilly to environmental situations they should just be ignoring.

Other Consultants around the world were seeing the same thing and, around 10 years ago, collaborated to introduce Mast Cell Activation Syndrome for these patients.  This is now a recognised disease entity with strict diagnostic criteria.

About four years ago, Dr S began getting referrals of patients with MCAS from colleagues working in other fields and realized he was seeing a lot of people with both Ehlers-Danlos (hypermobile type) and/or POTS.  There appears to be a link between these two diseases and MCAS but as yet no-one knows why.

Mast cells produce around 30 chemicals when they react, including histamine, prostaglandins and cytokines.  Historically, histamine has been extremely difficult to measure as it starts to break down immediately after it leaves the body.  Conventional histamine tests, where the sample sits on someone’s desk for hours, then is transported to a lab where it often isn’t tested for days on end, gives very unreliable results.  Dr S, therefore, only uses one lab to test histamine following very strict protocols.  This test measures:

  • plasma histamine
  • urinary histamine
  • spot methyl histamine/creatinine ratio
  • histamine releasing antibody

He also measures serum tryptase.  In some people, all these tests will be normal yet they will still have symptoms of mast cell activation.   In the past 12 months, Dr S has therefore arranged for serum PGD2, 24 hour urine PGD2 and leukotriene samples to be sent to the Mayo Clinic in America for testing, which often show evidence of mast cell activation even when histamine levels are within the normal range.  He also recommends a gene test for the C-kit mutation because around 10% of people with MCAS will have a faulty C-kit gene (responsible for histamine activation).

Current drug treatment options for people with MCAS are poor and much more work is needed to find more effective medications.  Current treatment consists of:

  • Second generation H1 antihistamines, which should be given in high doses, up to 4 times the level used to treat conventional allergies.  Doctors aren’t used to prescribing higher than normal doses of antihistamines, however it is safe and if they do a Google search they will see information confirming this.  Do not use first generation H1 antihistamines, such as Piriton (chlorpheniramine) as they cross the blood brain barrier and can cause serious side effects if used long term, particularly in children.
  • Mast cell stabilizers such as Sodium Chromoglygate (Nalcrom) or Ketotifen.
  • Monteleucast, which blocks leukotrienes.  This is used as a first line of treatment in the USA, but as it only blocks leukotrienes and not other mast cell mediators, Dr S prefers to try mast cell stabilizers first.
  • If all else fails, patients often try supplements such as Quercetin.  However, as there is no literature available on their safety and efficacy Dr S doesn’t prescribe these himself.
  • Following a low histamine diet is important.

Histamine Intolerance (HIT) is a totally separate disease to MCAS, although it can produce almost identical symptoms.  HIT is due to low levels of DAO in the gut.  DAO is used to ‘mop up’ the histamine we all produce when we digest food, plus any histamine contained in the food itself.  When DAO is low it can’t deal effectively with this digested histamine, which builds up in the body to produce toxicity.  Some people have MCAS only.  Some people have HIT only.  While others have both MCAS and HIT.

Some patients will test negative for histamine, PD2 and leukotrienes yet still have mast cell activation symptoms.  Mast cells produce around 30 mediators and we currently only test for a handful of these.  If all evidence points towards MCAS, Dr S will do a trial of antihistamines and mast cell stabilizing drugs and see how the patient responds.  It is recognized, however, that many people with MCAS tolerate drugs poorly, if at all.

As a patient it’s brilliant to see that, finally, MCAS is being recognised and the link between mast cell activation and EDS has been discovered.  However, there is a long way to go in terms of educating the mainstream medical profession on mast cell activation and this will include turning long held beliefs on the way the immune system and mast cells work on its head.  We also have to find more effective treatments, particularly for those of us who have mast cell reactions to currently available drugs.  “The journey of a thousand miles begins with one step.”

EDS update

I’m aware I  haven’t talked much about my Ehlers-Danlos this year, the reason being it’s thankfully the least of my worries.  My mast cell disease is far more troublesome and scary, and my ME rules what I can and can’t do every day, which is why the focus has been more on those.  However, that doesn’t mean my EDS has done a bunk so I thought I’d do an update on what’s going on with my badly behaving collagen.

As I’ve mentioned in my weekly update posts, the greater trochanteric bursitis in my hips finally seems to be settling down.  It took months of activity rest last year, followed by months on crutches, but at least I’m not in acute pain any more and am able to walk without looking like a constipated duck.  I fear though that my hips will never be the same again.  They are extremely stiff and I can no longer sit or sleep in the positions I’ve used since I was a baby.  I also have to be extremely careful when walking, always using my SI belt to stabilize my hip area.  I do still have pain and as I’m sitting here typing this in my bed both hips are on fire, but at least it’s now manageable which might be the best I can hope for.

My hands too have been really quite good during the past 8 months or so.  In 2013 they were giving me all sorts of gyp and I was wearing Oval 8 finger splints every day, plus my wrist braces whenever I did anything.  I have no idea why but all this seems to’ve calmed down and I haven’t worn my finger splints yet this year at all, and my wrist braces only occasionally.  Yayyyyy :-)

I had really painful tendonitis in my right elbow for the whole of 2012 and 2013, but this has also improved and only niggles now if I’ve overdone it.  Big Brucie bonus, cos you don’t realize how much you use your elbows until they hurt!

My knees were playing up late last year, with strain-type ligament pain on the inside of both legs but again this seems to’ve calmed down without any intervention.  I do have orthotic insoles in every pair of shoes I possess though, including my slippers, and dread to think what my ankles and knees would be like without them.

Speaking of ankles, apart from stiffness when I’ve been in one position for a while, they too seem to be doing OK.  Horrendously stiff ankles first thing in the morning in 2010, which made walking for the first hour of every day impossible, was the symptom which eventually lead to my EDS diagnosis.

On to the negatives.  My eye floaters are appalling and reading or doing computer work is tortuous.  If I could tolerate drugs of any kind I’d be at the eye hospital for laser work or a complete lens fluid replacement but with my MCAD I just can’t risk it (or afford it at £2,500 per eye!).

My right jaw is still bothering me, although to be fair it’s less painful now I’ve had my upper right molar removed.  I have a mouth brace to try but it’s way too tight and makes my teeth throb.  I really do need to make an appointment to get a better fitting brace made – it’s on my ever expanding list of “things to do!”.

I thought having my molar out would cure my teeth/gum/cheek bone pain but sadly that’s not been the case.  My cheek bone still aches constantly and the teeth on either side of the molar that was removed are sore and tender.  I thought this would settle down in time, but it’s now been 8 months since I had the tooth out and nothing much has changed.  It’s hard to describe the symptoms as the pain isn’t acute, it’s more of an irritating, annoying achy pain like an itch you can’t scratch.  I constantly want to bite down hard on my teeth and rub the gap in my gum where my tooth was with my tongue.  There is barely a second of any day where I’m not aware of my missing tooth and my surrounding teeth, which isn’t how I imagined it would be.  Not a clue what’s going on there and the dentist is none the wiser either.

I’m having some issues with my neck, in as much as if I tilt my head backwards (eg to lie on a pillow) I get pins and needles and feel weird and dizzy.  Solution: don’t tilt your head back Jak ;-) .  Seriously, there’s no point in having it scanned or anything being as though surgery is out and any kind of drug intervention is also out.  Zero pointyness.

My stomach/GI problems are many and varied and demand a post all of their own but suffice to say constipation, pain, severe nausea, cramps and reflux are the worst offenders.

My biggest problem at the moment EDS wise is upper back pain.  It’s right between my shoulder blades and feels muscular in nature.  I think my ligaments are really weak and by mid afternoon they’re just too tired to hold my upper body upright without straining to the point where the burning, aching pain is hard to live with.  I’m also having acute pain along my rib cage on the right hand side and have a really sore point when it’s pressed.  Could be ligaments again, or rib slippage or any number of other things.  This back and rib pain is difficult to treat, bearing in mind I can’t take drugs and it’s impossible to place TENS pads in-between your shoulder blades yourself, even when you’re super bendy ;-) .  I haven’t been able to find a wearable upper body brace either – my DD breasts keep getting in the way!  So if any of you have recommendations for comfortable upper body supports which don’t cost the earth and can be bought in the UK please let me know.

So, that’s me from H-To-T.  More fragile than fierce but it could be a whole lot worse!

Twisted Individuals

There are some truly sick individuals in the world.  I don’t mean sick as in ill, I mean twisted nasty sick-in-the-heart people and sadly when you blog you cyber-meet some of them.

Marley (I know her real name and email address but we’ll go with her pseudonym for now) posted a really nasty comment to my post on the UK General Election today.  It ended by her telling me to ““Go Fuck Yourself!” and don’t come to the U.S.”.  She also told me to “go and chew on my farm raised lamb” which, considering I’ve been vegetarian for 26 years I’d prefer not to.  It’s not the first time she’s thrown a hissy fit at me which makes me wonder, when she obviously dislikes me so much, why she continues to read my blog.  And my photography blog.  I think she secretly has a crush on me.

Her comment made absolutely no sense whatsoever.  I have no bloody clue what she was so riled up about.  She seemed to be blaming me for her being on disability or something which, considering my post was about my worry over cuts to disability benefits, was just plain bonkers and twittered on about ISIS and bearing arms – WTF?!

I welcome you all into my life.  Into my private thoughts.  This is MY space to say whatever the hell I like.  You don’t have to agree with me and when you disagree you have 2 choices: keep your mouth shut, or disagree politely, calmly and respectfully.  I will not put up with ranting or downright nastiness – it has no place here (or anywhere else come to that).

I would never, in a million years, shout and rave at a sick person especially one who has very recently talked about feeling suicidal.  Shame on you Marlene.

She told me: “do not go off and ” have a cow” about this post”.  Well y’know what?  It’s MY blog and I can have a cow about anything I sodding well like.  You, missus, on the other hand are banned from any further comments and I hope you bugger off and bother someone less ill with your moody, angry, fucking nonsense.

And the winner is

Politics isn’t a subject I cover on my blog, neither am I an activist.  Despite studying politics at A level, and working in the political wing of local government when I developed M.E., I found very early on in my illness that the whole subject was just too stressful for me and zapped my energy to the point where I had none left to do anything else.  I had to give it up and leave lobbying and activism to the healthy (and the sick daft enough to use their precious energy on it which, no offence, to me is lunacy when you have M.E.).  However, as many may know, today is a General Election here in the UK and by tomorrow we will know who is going to govern us for the next 5 years.

I’ve voted Labour all my life (for my American visitors, Labour=Democrat and Conservative=Republican, kind of).  Labour is the party of the working classes of which I am a card carrying member.  For the past five years we’ve had a Conservative government in power and, if I’m honest, it’s been proper scary.  They have demonized sick and disabled “scroungers” to such an extent I’m surprised we’re not stoned in the street.  They have made sickness and disability benefits so hard to obtain that almost no-one qualifies, and there have been literally hundreds of people who have had their benefits withdrawn and gone on to either die from their disease or kill themselves as they had nothing to live on.  The emphasis has been on “hard working families” of which I am not a member.  I am single, childless, sick and unable to be “hard working” in the traditional sense of the word – in the government’s eyes I’m pretty worthless as a human being.

According to the government’s own figures, there are over 10 million Britains living with long term sickness or disability.  Many are retired, some are working, and some are not.  We are at best ignored and at worst denigrated.  Big mistake.  We may be ill, many of us may be benefit claiming scroungers, but we are still VOTERS – a fact the government seems to forget.

My local MP has a Conservative safe seat.  My vote for some other party is wasted as I live in farming country and the majority of farmers vote Conservative.  So, I decided to write to my MP and tell him a little bit about my life.  Here’s a section from my letter:

Please remember, however, that we are not all fit enough to build Cairns or run community Pubs, or be “hard working” in the accepted sense of the word but that doesn’t mean we have no worth. I volunteer my time each month putting together our Parish newsletter from my bed – I’m not well enough to attend Parish meetings but by helping with the newsletter still feel I’m contributing to village life. I run a blog, which attracts over 400 visitors every day from 188 countries around the world – in sharing my life with others I hope I show them they’re not alone in their struggles. I do my elderly parent’s shopping from my bed via Tesco.com as they don’t know how to use a computer and nowadays struggle to get out as my Mum has heart and lung disease. I also shop for my next door neighbour, who has advanced Parkinson’s disease, and his wife, who is 88 and unable to drive. I adopted an unwanted dog (one of several rescued animals over the course of my life). I even help to employ 2 local people, one to clean my house and one to walk my dog as I’m unable to do either. To all of the people in my life I have value and worth.  It may not be on a grand scale, but to my parents and my little rescue dog I am everything – sick or not.

I received a reply, which stated:

I agree that rhetoric on issues like unemployment, or those who claim
benefit support, can sometimes go too far and take on an unpleasant
tone. You are a powerful example of the damage this can cause, and no
one should ever be made to feel worthless.You clearly do a tremendous
amount for your local community.

To give the man his due, he’s actually an excellent MP and did help to have my sickness benefit re-instated when it was removed when the new rules were introduced by his boss.  He is also highly intelligent and has been touted as a party leader of the future, which is why he needs to know what life is like for everyone in his constituency.  My letter was quite lengthy and I don’t think he’ll forget it in a hurry.

I hope sick and disabled people vote today – I do mine by post in case I’m too unwell to get to the polling station.  And please don’t vote for a marginal party like the Greens – they’re never going to get into power and your wasted vote just lets the Conservatives back in.  If that happens I truly fear for my future, as they’ve been bold enough to openly pledge that they will make further cuts to sickness and disability benefits, when many of us are already living in poverty as it is.   Maybe they hope we’ll all just top ourselves or be killed at birth – it’d save them a bomb on welfare which they could then give in tax breaks to businesses.  After all, a strong economy, money, greed and excess is what life is all about – people are unimportant.

Life is messy

I watched the most wonderful drama on TV last night.  It was the true story of Lisa Lynch, who was diagnosed with breast cancer at the age of 28.  She simply couldn’t relate to the “cancer is a gift” bollocks, or the “you have cancer to learn a valuable life lesson” bollocks, so starting blogging about the reality of cancer which eventually turned into a book called ‘The C Word’.

I could totally relate to Lisa writing to help her cope.  It’s why I started this blog in the first place.  I just couldn’t do the forum thing, with the perky-and-positive brigade or the I-have-one-hive-and-think-I’m-dying brigade.  And I couldn’t read other blogs, where the author starting eating a wheelbarrow load of kale, raw cacao and medjool dates and was suddenly cured.  I needed a place where I could just tell my story like it is, warts and all.  Where I could rant, and swear, and be angry and be depressed……..because when you’re chronically ill you’re all of those things.  You just can’t tell your nearest and dearest you’re all of those things, because they need you to be upbeat.  To “fight”.  To get better.  They don’t need honesty – it’s just too………..well, honest.

I didn’t know Lisa’s story beforehand and as I watched her go through treatment, start to recover and become cancer free I thought to myself “here we go, yet another I-beat-fucking-cancer-story” and it really pissed me off.  Life isn’t that neat.  We don’t all “beat” our diseases and I’m fed up of feeling like I’ve failed because mine has gotten worse again lately, not better.  However, as it turns out Lisa’s story wasn’t quite so neat either and she died in 2013.  Not that I would wish that on anyone, obviously, but it makes a change to see something on TV which doesn’t have a Disney happy ending.  Because, on the whole, life doesn’t.

I’ve also read a book lately which I wanted to share.  It’s the true story of Anna Lyndsey who, in her mid twenties, suddenly becomes allergic to light.  All light.  And ends up living in a completely blacked out room.  There again, after several months Anna starts to be able to tolerate light again and I was braced for the “I beat my allergy” ending but, without spoiling it for anyone who wants to read, it didn’t quite work like that.  Having been bedridden for nearly 10 years, much of the time spent in the dark and quiet due to severe noise and light sensitivity, and now living with frightening anaphylactic reactions I could relate to Anna’s story in many ways.  The hope, the despair, the boredom, the isolation, the thoughts of ending it all and the trying to make my life still mean something.  ‘Girl in the Dark’ is available both in hardcover and Kindle download from Amazon.

These stories differ from mine in a major way though, in that both these women had hugely loving, loyal and supportive partners and families.  One particular scene in Lisa’s story found her lying in the bath, too weak to get out, and she shouts for her husband who comes charging in and rescues her.  Having been in that exact same position, I just had to lie there getting hypothermia until I finally had the strength to haul myself out of the tub where I promptly passed out on the carpet.  Having come to, and still alone, I crawled back to bed and lay there, hungry, naked and freezing, until the next morning when I had to summon up the energy to get up again, put some pjs on and make my way down to the kitchen for some toast and a hot drink.

While it’s wonderful to hear stories of people who triumph over illness, and it gives us all hope that we too will see recovery, it’s equally reassuring to hear about people whose stories are more realistic.  Who are either beaten by their disease, or who simply have to learn to live with it.  It makes me feel less like I’ve flunked as a sick person or that I’m doing something wrong. Watching Lisa go from a confident, witty, outgoing, optimistic young woman who was going to kick cancer’s ass, to a depressed, exhausted, anxious, weepy wreck was reassuring, because it’s how the story goes for a lot of chronically ill people.  It’s easy to cope with illness in the early days/months/years but as time goes on and you realize you’re back to square one and the entire battle has to be fought again, and again, and again, or when you finally get a grip on one symptom only to find another one smacks you in the gob, it gets much harder to keep your pecker up.  Life isn’t neat.  It’s unfair and messy and unpredictable and we just get through the best we can.