The M Word

Last week, Newsnight presenter Kirsty Wark appeared in a documentary on the Menopause.  To be honest it didn’t tell me anything I didn’t already know but it was nice to hear about another woman’s experience because we just don’t talk about it in this country, not even amongst ourselves.  Yet it will happen to every single one of us.  I remember joining my Camera Club and was talking to a woman there in her early 60s.  I was rampantly hormonal that night and got confused so said jokingly “ignore me, I’ve got Menopause brain” and her eyes nearly popped out of her head that I would mention the ‘M’ word in polite conversation.

Historically, women’s hormones have been a taboo subject because we’ve lived in a male dominated world, even though men are currently in a 48% minority here in the UK.  Yes we had a female Prime Minister in the form of Margaret Thatcher but she only rose to power because she acted like a man, which kind’ve defeated the entire purpose of having a woman in charge.  Girls have always been seen as emotional, hysterical creatures simply because we behave differently to men and anyone who shows emotions is still seen as weak and not to be relied upon – then we wonder why mental health issues affect 1 in 3 people

Women are just supposed to get on with their periods.  The adverts on tv tell us if we only use x brand of tampon we’ll be running marathons or climbing mountains, and if we pop a Feminax Ultra we won’t know what pain is.  Thankfully for some women this is the case but for others periods are a form of 4 weekly torture and going about our day business as usual is jut not possible.  This of course intensifies during Menopause yet we’re supposed to act like nothing is happening.  We are, thankfully, now sympathetic to puberty-induced erratic behaviour, door slamming and crying fits, and pregnant women are allowed days off work if they’re unwell, but the Menopause is still ignored and I can’t for the life of me understand why.  It’s the largest bodily change in any woman’s life and can cause absolute havoc.

We aren’t even honest about Menopause amongst ourselves.  When my periods first started to change and I suspected peri-menopause I went to see my (female) GP who said “well it’s a bit early but it only lasts 2 years then it will all be over with” which even I knew was a big fat lie!  Six years on and there is still no sign that my periods are about to stop for good.  The biggest shock of the documentary for me was to hear that at age 61, and ten years after The Change, Kirsty still has Menopause symptoms in particular the fact that she still doesn’t sleep well.  The myth that our periods stop and that’s the end of that may be true for some women, but certainly not for all.  In a phone-in for the documentary a 72 year old woman rang up to say she was still having hot flushes every single day of her life twenty years after her final period and I remember my paternal Grandmother started to sweat profusely following Menopause and didn’t stop ’til the day she died.  My own Mum’s vagina atrophied so much in her mid seventies that she was prescribed oestrogen pessaries and her (female) Gynaecologist joked “women were supposed to die shortly after Menopause, so to be honest we’ve no idea how to treat hormone-induced symptoms in old people!” which tells you everything you need to know about the lack of information given to medical students in respect to older women and the female-related issues they face.

I don’t particularly want to celebrate my Menopause but I have no intention of ignoring it either.  I will bring it up in conversation if I feel the need and people can be as shocked as they like.  I won’t beat myself up, or apologise for, feeling irrational or emotional and will pamper myself when I’m feeling physically crap.  I won’t be hard on myself when I’m fatter at 55 than I was at 45, or joke about needing an afternoon nap.   All this is normal and it’s about time society recognized this huge transition in women’s lives and made allowances.

 

More on peri-menopause

I’ve had a request for an update on my peri-menopause.  Apologies to my younger, and male, readers to whom this doesn’t apply – be thankful cos it sucks.

I first noticed my periods had started to change back in 2012 – I’ve charted my cycles since then which you can see in this post.  I also wrote about my journey to date last July which you can read here.

Nothing much seems to have changed in the last 6 months as far as I can tell.  My periods continue to be regular though a bit erratic.  My last five cycles have been 23 days, 28 days, 26 days, 21 days and this month 25 days.  Bleeding is heavier than it used to be, particularly on the first day, and more clotty.  I can find myself changing tampons every 1-2 hours because they’re soaked.  I’ve actually fainted a few times in the past 6 months while having my period.  I now know this is probably due to very low iron levels.

I’ve never had long periods, usually 2-3 days, and this hasn’t changed.  However I’m now spotting, sometimes quite heavily, for up to 4 days after my period has finished which is new.  Also new this month is mid-cycle spotting.  I’m currently on day 9 of my cycle and have had a brown/bloody discharge for the past 24 hours.  I’ve also had stomach cramps and severe nausea, however I think that may be related to the iron supplement I’m taking so I’m discontinuing that for the next few days to see if it settles then will try it again once ovulation is over so that I know which symptom belongs to what.

My brain fog is currently dreadful.  I feel like I’ve been koshed over the head and all I want to do is sleep.  However, this could be down to my anaemia – when you have different health issues going on it’s so hard to know what’s causing what.

My sleep has definitely been worse the past few months.  I get off to sleep OK but wake several times during the night and I’m having some powerful dreams/nightmares.

My legs are on fire by 9pm every single night.  This has been going on for some years now and gives me wicked restless legs which drive me insane.  My top half is freezing but my feet are dangling outside the covers even though it’s winter and often sub zero at night!

I have some pretty bad night sweats, where I wake covered in a film of what feels like oil from head to toe, but these are currently confined to when I’m actually having my period or the few days leading up to it.

I have vaginal dryness, though so far only around ovulation and for a week or so after menstruation.  I’ve always taken my vaginal lubrication for granted and now realize how important it is.  When it’s absent your knickers rub against your bits and actually make them sore 😦   I’ve had to buy some K-Y jelly to combat this, which stings when I first put it on but does thankfully settle down.  My skin is much more dry in general.  I’ve never really used moisturizer on my face but now feel the need to, simply because it feels itchy and tight if I don’t.

My breasts seem to be very tender most of the time.  I only have about 5 days after the end of my period where they’re OK then the aching and tenderness start again.  New in the past few months has been stinging, shooting nerve pain which goes from under my armpits to my nipple.  Ouch.  No, really.  OUCH!  I’ve had this checked out via a mammogram and thankfully all is fine and it’s just been put down to my hormones.

I always forget to mention sex drive when talking about my peri-menopause because I’m not in a relationship so it’s basically irrelevant to me.  However, for those who are interested my libido seems to be largely unchanged though does fluctuate massively with my menstrual cycle.  I am intensely horney around ovulation and again around my period week, but not so much the rest of the time.  If I were in a relationship, however, I’d be far too knackered and nauseous to want rumpy pumpy.

For the entire time of peri-menopause I’ve had palpitations.  I’m sitting watching the telly and all of a suddenly I skip a heart beat then get a huge thump of a heart beat after it, or I get a run of thumpy beats.  They’re really unpleasant and as the adrenalin surges round my body it can make me feel quite anxious.  I’ve had them checked out with a 24 holter monitor and the doctor said they are nothing to worry about – it sure doesn’t feel benign though when you’re having them.

My memory is truly awful and I struggle for words constantly (I sat for quite some time trying to think of the word “benign” in the previous paragraph!).  It’s embarrassing and frustrating to have such poor cognition and I know this probably won’t improve now and I’ll just have to live with it.

I’m sorry to have to tell other EDSers this, but since I started peri-menopause 5 years ago my joints and ligaments have gone to hell in a handcart.  I’d never subluxed a joint until my hormones started to wane and my body seems to have stiffened up literally overnight.  I feel like my body has aged 20 years in my mid forties.

On the plus side I’ve had much fewer migraines since I started peri-menopause.  I used to have them up to 3 times a week, and they’re now down to around 2 a month and these are confined to ovulation and menstruation 🙂

My energy levels are rubbish, but again I think that’s down to my anaemia rather than the peri-menopause per se (although it’s probably the menopause which is causing the anaemia!).  No matter how exhausted I feel, though, I do try and get out for a short walk every single day as I feel continuing to exercise is really important for bone health, muscle strength, mental health and Vitamin D levels.

My mood is good on the whole.  I do have odd days where I feel intense and inexplicable rage, and days where I could burst into tears at the slightest thing, but nothing which isn’t manageable.  I do also have days where I feel intensely anxious for no good reason, but again this is to be expected with wildly surging hormones and isn’t anything I can’t handle.

I seem to be hungry all the time and it’s really hard not to cave in to the munchies.  Many women gain weight around the menopause then can’t shift it, so I’m really conscious of how much I’m eating and how little I’m exercising as I’m exhausted much of the time and in so much pain.  I’ve gained 4lbs in the past 6 months, which doesn’t sound much but I’m only tiny to start with and my jeans are definitely uncomfortable!  The bloating from my endo and adeno isn’t helping the situation one iota.

The biggest plus for me so far is that I’ve not had any hot flushes.  Over the 5 years of peri I’ve only had two, though I’m sure I won’t get off scott free!

In a nutshell, so far the worst symptoms for me have been:

• Nausea
• Hot legs and feet at night
• Marked worsening of my Ehlers-Danlos syndrome

But bonuses have included:

• Much fewer migraines
• So far no hot flushes

The thing which has disappointed me the most is how long the whole process is taking.  My Doctor said once my periods started to change it would all be over with in 2 years – wishful thinking that was!  I’m 5 years into peri-menopause and the whole thing seems to be taking forever.  You read about it lasting up to 10 years and secretly think to yourself “nah, it won’t take that long for me” but I currently feel like the whole thing is interminable.  I just want it over and done with so that my body can re-adjust and I can learn to live without my hormones.

 

 

 

Onwards & Upwards

Following on from my last post about being fundamentally happy despite everything, I just want to point out that this doesn’t mean I live my life in a zen-like stupor.  Hell to-the-no.  I am chronically ill and peri-menopausal – trust me when I say I have really shit days.  Like today.  I woke at 6am and the second I opened my eyes I was both pissed and weepy, my hormones raging like a spotty teenager.

There are days where I can’t eat, can’t walk, can’t sleep, can’t shit, can’t drive and have the brain function of a coma patient.  I get fed up of being sick, in pain and chronically exhausted.  I get frustrated and angry and cry snotty tears into my duvet.  I feel achingly, achingly lonely and hugely isolated.  Overwhelmed and unsure how to go on.  Which is all perfectly normal.

A friend from Camera Club is moving away and I am going out with him, and two other friends, for a farewell lunch today.  As it stands right now I don’t think I can speak without bursting into tears.  My brain is stuffed with cotton wool, every time I move the room spins and the dog can hear my painful stomach gurgling from across the room.  I think my ‘bad’ rib has partially popped out during the night which means every breath is painful and, despite a relatively good night’s sleep, I feel like I haven’t been to bed in 10 years I’m so exhausted.  Every cell in my being wants to pick up my phone and cancel.  But I won’t.  If I stay home alone I will spend the day in bed bawling my eyes out.  If I go out I will be forced to get my act together and it will take my mind off my suffering for an hour or two.  I wish my life weren’t like this, but it is and wallowing won’t help.  I am going to have a good cry before I go though which I’m hoping will get it out of my system and I won’t boo hoo into my risotto which I’m sure would make the three guys I’m with pretty uncomfortable 😉

Our emotional health has to be managed just like our physical health.  I am so ill that I could cheerfully stay in bed every day for the rest of my life, but if I did that my muscles would waste, my bones would crumble and my heart and lungs would pack up.  So no matter how utterly, utterly exhausted I feel, how much pain I’m in, how nauseous I feel or how weak, I get my arse out of bed.  I don’t always manage to get dressed and have been known to take Bertie out on the scooter in my pyjamas under my wet weather gear, but I get up.  And I do the same with my emotional health.  Today I would love to not be going out.  I would love to stay in my snuggly, warm bed having a pity party for one but I won’t because I’m not sure what it would realistically achieve other than giving me a whopping headache (why does crying give you a bad head?!).

Onwards and upwards my warrior friends (and failing that, just sit at the bottom of the hill in your jim jams 😉 ).

 

 

Anaemia

I’ve been feeling really washed out the past couple of months and my get up and go has got up and gone.  Both ME and EDS cause “fatigue” but I’ve had both for so long that I know what that exhaustion feels like and my current waffy-ness feels different.  I’ve also been dizzy……a lot.  I do suffer from dizziness as part of my existing conditions, but only for the odd day now and then and it’s usually so severe I can’t get out of bed.  My current dizziness is milder but ever present and each time I turn my head the world tilts slightly on its axis.  Plus I’m not sleeping.  I’ve had insomnia for over 2 decades but again this feels different and I just have a niggle that “summat’s up”.

Of course I am peri-menopausal and fatigue, dizziness and insomnia are simply part of the bag for many women.  But then so is anaemia especially if your periods are heavy, and mine are definitely heavier than they used to be.  There are various types of anaemia, but in menstruating women iron deficiency anaemia is the most common so I made an appointment to see the nurse today to get my bloods checked.

I have just about every risk factor for anaemia going:

1.   Peri-menopause/Menopause

Any menstruating woman can be at risk from anaemia, particularly if she has heavy periods.

2.   Endometriosis

I’m not just bleeding from my uterus every month, I’m also bleeding into my pelvic cavity because I have endometriosis.

3. MCAS

Anaemia is the most common issue affecting red blood cells in MCAS patients.  See Lisa’s excellent post written on this issue over at Mastattack.org

4. Gastritis

Any type of inflammatory stomach or intestinal disorder can cause anaemia, eg. gastritis, ulcers, diverticulitis, crohn’s disease, colitis, coeliac disease, GERD (ie acid reflux).

5. Drugs used to treat GERD

PPIs, H2 blockers and antacids can all interfere with iron absorption and I have been swigging Gaviscon and Rennies recently like they’re going out of fashion on top of taking an H2 antihistamine.

4. Diet

I’ve been pesco-vegetarian for nearly 30 years.  Before getting Histamine Intolerance I was very careful to eat a wide range of high iron vegetarian foods but since getting HIT and having to eat low histamine I’ve had to remove many of these from my diet, eg. spinach, soya beans, kidney beans, dried fruit, cashew nuts.

Diet deserves special mention.  People with ME, EDS, HIT and/or mast cell diseases are often on restricted diets of one kind or another.  Here in the UK we hardly ever get to see a Dietician, so are left to try and work out our food issues alone.  We often don’t have the skills or knowledge to decide if we’re eating enough of the right foods to give us all the vitamins and minerals we need, so it’s really important to have our bloods checked once a year just to make sure we’re not deficient (I was shocked to learn today that I hadn’t had a full blood work up since 2014 despite all the various issues I’ve had in the past year or two!).

I won’t get my results back until early next week, so I’ll keep you posted.  For those of a religious disposition please pray I’m not anaemic and don’t need iron tablets.  My poop is the only thing in my entire digestive tract which is currently normal so the last thing I need is to not be able to go-potty for days on end! 😉

Weekly roundup

In order for me to get through everything I need to do with my very limited energy I have to have a schedule.  I break the week up into days and each day up into hours and each hour has an activity.  It stops me feeling overwhelmed and (in theory) stops me from doing too much of a particular activity at any one time which helps with energy management.  Doing fun things, and not doing anything at all, are built into my schedule.  If they weren’t I’d do nothing but chores 7 days a week and I’ not prepared to have a life devoid of leisure time.  The system works until I have a migraine or my period or my patio floods and I have to get an emergency plumber and can’t get my jobs for that day done.  Then it all turns to shit 😉

I’ve been ragingly hormonal for days, despite it being a week since my period ended.  When I’m hormonal I crave dairy products for some bizarre reason.  Warm milky drinks, ice cream, rice pudding (mmmmm I could eat a rice pudding right now and it’s 7am!) which I don’t eat at any other time.  I just go with the flow as my body is obviously trying to tell me something.   Friday I spent the day ravenously hungry which is usually a sign I’m getting a migraine, and sure enough I woke in the middle of the night with my brain throbbing.  Luckily it wasn’t a bad one though and had largely gone by lunchtime.  Last night I went to bed fine, woke at 3am and felt horrendously depressed and started to cry, managed to talk myself round and go back to sleep and have woken this morning absolutely fine again.  This peri-menopause malarky is seriously bonkers.

My EDS has taken a proper nosedive in the past few months.  I don’t know whether it’s weather-related, hormone-related or not related to anything in particular.  It’s such a shame because ME-wise I feel relatively stable and MCAD-wise I feel quite good (!).  I’m in pain just about everywhere, all my ligaments and muscles are stiff, I can’t get comfortable no matter what I do and I walk about like a bloody 90 year old.  I’m also permanently knackered (the lack of energy from my EDS is totally different from the ill-exhaustion I feel when my ME is bad) so I’m finding living life on a practical level hard work.  These are the times I wish I were rich and had servants.

I had some great news this week about my furry friend Bertie.  He’s had a large lump on his tail for some months now and the Vet hasn’t been sure what it is.  She didn’t want to do a biopsy as there is very little skin on a dog’s tail and wounds are notoriously difficult to heal, so it’s been monitored for changes.  Over Christmas I noticed a scab had formed so went back to the Vets this week for a check.  She was able to remove the scab and squeeze ten tonnes of cheesy crap out of the lump, which proves it was a cyst and nothing more sinister.  I’m so relieved and I’m sure Bert is much more comfortable with all that nasty gunk gone.

I’m ready for spring now, even though it’s at least 2 months away.  It takes forever to get all my kit on to take Bertie out and, although it’s been a good winter in most respects, I’m just ready for it to be warmer.  Mind you, when it gets warmer it tends to get wetter then I moan about the rain!  Let’s face it, I just wish I lived somewhere sunnier even if it is stunningly beautiful here.

I’ve been bargain hunting on Ebay this week.  I have some ideas for some gothic-inspired photographs so have been ratching for medieval costumes.  Ebay and Amazon are fucking brilliant – you can buy anything on there and often for under a tenner (which is a good job cos I’m absolutely broke).  Watch this space!

 

 

Weekly roundup

I really should learn to keep my ginormous mush shut.  I forget the Gods are listening and the second I boast about “not having any symptoms” of peri-menopause they decide to give me some just to prove me wrong.

Ever since my last period I’ve been in hormone hell.  I have had griping period/endo pain for the entire month but worse, oh so much worse, my nipples have been itching.  This is no ordinary tickle, but a Holy Mary Mother of God raging itch which can’t be satisfied and which makes me want to tear the damned things right off my body.  I have tried all sorts of creams which haven’t helped and resorted to wearing gel nipple guards which I keep in the fridge to stop them rubbing against my bra (the cold means I now have permanent nipple erection!).  The itching was preceded by a couple of weeks of pain – shooting, stinging nerve pain which woke me up from sleep.  I’m not sure which is worse.  Actually, scrap that, I do know which is worse – the sodding itching!!

I already had an appointment booked with my GP for Friday on another issue (more of that below) so thought I’d mention the itching to make sure it was just hormone related.   I’d examined my breasts and found nothing untoward, however when the Doctor examined me (pressing so hard on my massively tender and sore boobs I nearly went through the ceiling) she found a pea sized lump.  Shocker and not at all what I was expecting.  As I have no other changes apart from a very small bruised area on my right breast she doesn’t think it’s anything sinister, however has made an appointment to see me again in two weeks to see if it’s still there.  If it is she will refer me to the Breast Clinic at the hospital for tests.

The original reason I went to see my GP was about the tremor I first noticed back at the start of the year and which I wrote about in this post.  The Doctor has confirmed that it looks like I do indeed have a Benign Familial Essential Tremor which doesn’t exactly fill me with joy.  My Mum can no longer cut her nails, pick up a cup of tea, hold a book or even write her own name and knowing I have that to look forward to is pants.  Why am I the child who has inherited every genetic condition in my entire family while my brother has gotten off scot free?!  He even has EDS/Marfan traits but not a single symptom and, while I wouldn’t wish illness on anyone, it would feel more fair if he had at least a share of the genetic crap-o-la instead of me being landed with the lot.

Wednesday my cleaner cancelled on me again as her back is still bad, and to add insult to injury my dog walker cancelled the same day as her daughter was ill.  I do hope the cleaner comes this week because the house is a pig sty and I’m in the midst of an extruciatingly painful period and not up to wielding either the hoover or the mop.

The week hasn’t been a complete right off though.  I entered the first print competition of our Camera Club season and the judging took place on Wednesday.  I’m shocked and delighted to announce I achieved both 1st (for my portrait) and 2nd (for my nature shot) in my league, pictures below:

 

Another year of Peri

When my periods first started to change back in 2012 when I was 44 and I realized I had probably started peri-menopause, I wanted to know about other women’s experiences.  There were legions of horror stories online, very little about the positive and hardly any actual hard data.  “It’s different for everyone” was a common theme, which is all well and good but I still wanted to know what was physically happening to other women to give me some companionship in my own journey through The Change.

Being as though I didn’t find a single story which tracked progression through peri-menopause I thought I’d track my own, so began compiling data on my menstrual cycle.  I’ve been a regular 27/28 day cycle person my entire life but in 2012 my cycle length started to subtly change and I initially experienced slightly longer cycles than usual.

In 2013 things went totally haywire.  As you can see from the chart below I basically had alternating long and short cycles, with a couple of very short cycles (for me at any rate).  I had my first daytime hot flush this year, but only the one, and no other real symptoms.  I did have my hormones tested and they came back as “normal” which isn’t at all unusual in the early stages of peri-menopause.

In 2014 my cycles were still abnormal, but not quite as erratic as the year before.  Again, no other symptoms of peri-menopause that I could put my finger on.

The start of 2015 saw my cycles even out, only to become erratic again in the second half of the year.  I also saw a couple of symptoms appear – vaginal dryness around my period, which doesn’t half make your ladygarden itch and is well uncomfortable as your undies rub against your bits, and changes in my mood.  I had sudden and inexplicable rages which were absolutely overwhelming.  Having never suffered from PMT I found being so out of control of my emotions really difficult, though thankfully the emotional hooha only usually lasted a day or two around my period.

I already have a full chart for 2016 even though it’s only October because my cycle lengths have shortened so I’ve fitted in 12 periods over only 10 months.  Despite the change in length my cycles have been fairly stable, apart from one very short cycle in August.  I’ve continued to have vaginal dryness and mood changes, but not felt the dreadful rage episodes I had last year – I still have a short fuse at certain times in the month but have been able to control it.  I’ve also had some really weepy episodes and feelings of being unable to cope, usually in the few days before my period starts.

From everything I’ve read about peri-menopause, in the early stages your cycles shorten then get much longer as you finally approach Menopause.  However, the very first sign for me that I’d started the change was a slight lengthening of my cycle, and only after a full year of that did my cycles start to get shorter.

The table below summarizes the changes in my cycle length and as you can see I still appear to be in the “shorter cycle” phase:

According to the research online, this means I’m still in the early-mid stage of Peri-menopause after 5 years!  You can see from the table that I’m progressing, but it’s painfully slow.  As you all know, because of my horrendously painful endo and adeno I’m desperate for my periods to stop but it’s still looking like a very long way off.  Somebody shoot me.

Probably because I’m still in the “early stages” I’ve not had any really troublesome symptoms and so far only had two hot flushes, though I’m assured these will increase during my final Menopause year.  I do have awful night sweats, but have had these for well over a decade so I’m not convinced they’re particularly menopause related.  Due to everything else that’s wrong with me, it’s impossible to tell if I’m more tired than usual and being as though I’ve had insomnia for 20+ years I have no idea if this has been made worse due to changes in my hormones.

With regards to bleeding, I’ve never had long bleeds – usually 3 days, followed by a couple of days of spotting – and this hasn’t changed.  I am more clotty but other than that no flooding.

So, that’s where I’m currently at.  At 49, and after 5 years of hormone changes, I honestly thought I’d be a bit further along in the process but it’s looking like I’m going to be one of those women who take 10 years to finally reach Menopause.  Bugger.  I know risks of things like osteoporosis (for which I have a very strong family history) and heart disease increase after menopause and most women want to stave it off as long as possible, but due to my horrendously painful periods I can’t wait for the 4 weekly torture to be over with.  I started my periods at the age of 11 and after 38 years of mess, pain, nausea, insomnia, diarrhea, migraines and exhaustion I’m soooooo over the whole thing.