Tag Archives: symptoms

Entering Menopause

I have been in peri-menopause (where hormones are declining but you still have periods) for nearly 8 years now but have recently skipped 2 periods so assume I’m finally transitioning into full menopause.  I am 52, which is the average age for Menopause in the UK, and have been desperate for my periods to end due to decades of horrendously painful endometriosis & adenomyosis-related menstrual cycles.

In the first 5 years of peri-menopause I only had a few symptoms, such as:

  • Sudden uncontrollable rages (though in fairness I was having a nightmare with my alcoholic Mum, so maybe not all of that was hormone-related!)
  • Dizziness (which turned out to be very low ferritin, ie iron, stores and once that was addressed the dizziness improved substantially)
  • Occasional itching in the lady-garden, particularly after my period which sounds trivial but drove me bonkers
  • Itchy skin
  • Insomnia
  • Oily night sweats, which went on for a good 4 or 5 years
  • Hair loss on a grand scale, though this could also be related to my mast cell disease
  • A couple of hot flushes

In years 5-7 of peri-menopause some of these symptoms went, only to be replaced by new symptoms:

  • The night sweats ceased
  • The rages subsided
  • The itchy skin was much improved
  • After treating my low ferritin stores the insomnia was much better and I slept really well

However, I then developed:

  • Shooting nerve pain in both breasts, plus a pea-sized lump which worried me enough to see the Doctor.  I had a mammogram and all was thankfully fine.
  • Palpitations and skipped heartbeats, which again worried me enough to see the Doctor.  I had a 24 hour Holter monitor fitted, which showed the electrical activity of my heart was abnormal but this was put down to hormones and no-one seemed concerned (they weren’t the one whose heart was having a hissy fit!)
  • I had several episodes of what felt like strokes – suddenly feeling like I’d been coshed over the head, saw stars, then struggled to speak.  This was usually followed by crashing blood sugar levels.  Very scary.  I think these were my version of a hot flush – trust me to be different.
  • My migraines increased in both frequency and severity.
  • Periods of anxiety, which is something I’ve never suffered from before.
  • I started feeling poleaxed by exhaustion, which was quite different from the poisoned, fluey exhaustion of my M.E. or the over-work exhaustion of my hEDS.
    meno tired
  • My brain fog increased.
  • I gained yet more weight (aided by out-of-control munchies), felt bloated with water retention and my breasts were often massive and very tender.
  • My periods became heavier and more clotty, but nothing uncontrollable.

This last 6 months, as I’ve clearly been transitioning from peri to actual menopause, things have changed again:

  • The shooting breast pain has gone, to be replaced by shooting nerve pain in my legs and feet.  It’s like being stung by a cattle prod and is truly unpleasant.
  • My back pain, from which I’ve suffered all my life but was under-control, has gotten much worse and my legs often feel numb.
  • My already present brain fog has been severe.  It reminds me of the days when I was bedridden with M.E. and feels like I’ve been drugged.
  • Exhaustion has been crippling and not helped by ongoing insomnia.
  • I’ve lacked motivation to do anything, which is very unlike me.
  • My moods have been up and down, either irritated by everything or completely overwhelmed by life.  Again, this is very unlike me as my mood is usually stable.
  • My migraines have been dreadful.
  • I’m as fat as a whale.
  • My entire body is stiff and I ‘ummpff’ when I get out of a chair.
  • My muscles are definitely weaker, my legs in particular but I also have no power in my hands for taking lids off jars or even writing.
  • My skin is very dry and starting to sag everywhere.
  • I’m hot most of the time.  It’s hard to describe, but is like I’m sitting uncomfortably close to an open fire.
  • I have a mild version of the head coshing events every morning.   I can be sitting watching the telly and my brain suddenly feels like it moves in my skull, then I get a whooshing sensation (a bit like I’m starting with anaphylaxis), then I feel a bit dizzy and off-kilter and my blood sugar plummets.  I’m still convinced these are my version of hot flushes – why couldn’t I just sweat like a normal person instead of worrying I have a brain tumour or am having a stroke?!
  • My brain fog is truly dire and I am slightly dizzy and disoriented all of the time.

During peri-menopause, I felt like my symptoms were manageable (stroke-like episodes aside which frightened the life out of me), but the past 6 months the whole menopause thing has become harder to cope with.  The worst aspects are the profound exhaustion where I literally don’t have the energy to get off the settee let alone cook a meal, and the brain fog which is so bad at times I simply can’t function.  I’m also continuing to have the stroke-like attacks, which now happen every morning and still scare the bejesus out of me.  I have aged literally overnight and it’s very disconcerting to look in the mirror and see some random stranger you don’t recognize staring back at you (I genuinely mean this – the ‘me’ I’ve seen my entire life has gone and it’s like my face has been replaced by someone elses!).

On the plus side, in the 2 months since my last period my migraines seem to be settling down again and I can’t describe how fabulous it is not to be tortured by severe period pain.  However, I am still getting period pain!  I seem to have constant low level, grumbling pain which ratches up into proper period pain every 2 weeks or so (though nowhere near as severe as when I bleed).  I wasn’t expecting that, though Dr Google tells me that “phantom periods” are normal and could go on for some considerable time.

So, that’s where I’m currently at.  This year, I must admit, has not been much fun and although I never thought I’d contemplate HRT there have been times when I’ve not been able to get out of bed where I’ve seriously considered it.  I’m holding off for now as HRT has its own side-effects (not least thrush, which I suffered from constantly when on the contraceptive pill) but never say never – watch this space.

hEDS v ME

There is a fascinating discussion taking place on Jen Brea’s facebook page about how many people with a confirmed diagnosis of hEDS (hypermobile Ehlers-Danlos Syndrome) also have a confirmed diagnosis of M.E. (aka ME/CFS) as defined by the International Consensus Criteria.  There is a poll and so far it stands at 91% of hEDS people who have also been diagnosed with M.E. (as per the ICC).  As one commentator rightly pointed out there is likely to be bias, as people with M.E. follow Jen and people without M.E. don’t, but even so it’s a high percentage.

Reading the comments, I was amazed to see that patients were confused about how you differentiate between M.E. and hEDS, and that some doctors had taken away their M.E. diagnosis when they were also diagnosed with hEDS.  WTF?!  While it’s true they do share some symptoms,  they also have very separate and distinct diagnostic criteria and as someone who has both it’s easy peasy lemon squeezy to differentiate between the two.  However, to avoid confusion I thought I’d look at the overlaps and the differences.  I will be using the 2017 International Nosology for hEDS and the International Consensus Criteria  for M.E.

OVERLAPS

When it came to looking at the common diagnostic criteria for hEDS and M.E., you will probably be as astonished as I was that they only share 1 common symptom:

  • Chronic pain

That is it!

However, when it comes to hEDS there are symptoms which are reportedly common in the patients population but which don’t form part of the diagnostic criteria because they haven’t been definitively linked to causation.  These should be taken into account when diagnosing hEDS in conjunction with the official diagnostic criteria.  More of these symptoms are shared with M.E. including:

  • Autonomic dysfunction
  • Dysautonomia/POTS/orthostatic intolerance
  • Gastrointestinal symptoms, eg nausea, IBS, pain, dysmotility (constipation/diarrhoea), early satiety (ie feeling full quickly)
  • Allergies/hypersensitivities to chemicals, odours, environmental triggers, foods (ie MCAS!)
  • Headaches/migraine disorder
  • Impaired proprioception (ie being clumsy)
  • Genitourinary issues (ie weeing a lot, pain on urination, painful periods/endometriosis)

 

DIFFERENCES

hEDs requires:

  • joint hypermobility

Plus 5 of the following:

  • Unusually soft or velvety skin.
  • Mild skin hyperextensibility.
  • Unexplained striae such as striae distensae or rubrae at the back, groins, thighs, breasts and/or abdomen in adolescents, men or prepubertal women without a history of significant gain or loss of body fat or weight
  • Bilateral piezogenic papules of the heel.
  • Recurrent or multiple abdominal hernia(s) (e.g., umbilical, inguinal, crural)
  • Atrophic scarring involving at least two sites and without the formation of truly papyraceous and/or hemosideric scars as seen in classical EDS.
  • Pelvic floor, rectal, and/or uterine prolapse in children, men or nulliparous women without a history of morbid obesity or other known predisposing medical condition
  • Dental crowding and high or narrow palate.
  • Arachnodactyly, as defined in one or more of the following: (i) positive wrist sign (Steinberg sign) on both sides; (ii) positive thumb sign (Walker sign) on both sides
  • Arm span‐to‐height ≥1.05
  • Mitral valve prolapse (MVP) mild or greater based on strict echocardiographic criteria.
  • Aortic root dilatation with Z‐score > +2

And/or:

  • A positive family history of EDS
  • Dislocations or frank joint instability

Plus:

  • Absence of unusual skin fragility
  • Exclusion of other heritable and acquired connective tissue disorder
  • Exclusion of other heritable and acquired connective tissue disorder and diseases which could account for the above symptoms.

None of the above form part of the diagnostic criteria for M.E.

M.E. requires

  • Post-exertional neuroimmune exhaustion characterised by:
    – Marked, rapid physical and/or cognitive fatigability in response to exertion which is debilitating and causes a relapse.
    – Postexertional exhaustion which may be delayed by hours or days.
    – A prolonged recovery period, typically 24 hours or more.  A relapse can last days, weeks or longer.
    – A substantial reduction in pre-illness activity level, by at least 50% (which tends to be forgotten and is why I query anyone having an M.E. diagnosis if they still work full-time).

Plus the following:

  • Neuro-cognitive impairments which become worse with activity.  These include:
    – confusion, disorientation, speech problem, new-onset dyslexia, cognitive overload.
    – short term memory loss.
  • Unrefreshing sleep & disturbed sleep patterns, eg. insomnia or hypersomnia (not due to pain or other symptoms).
  • Neurosensory and motor disturbances.  These include:
    – inability to focus vision/abnormal accommodation response of the pupils.
    – sensitivity to noise, light, vibration, touch.
    – muscle weakness, twitching, ataxia, abnormal gait/positive Romberg sign.
  • Chronic flu-like symptoms which worsen with activity, eg. sore throat, tender/swollen lymph glands, fevers/chills.  Also:
    – susceptibility to viral infections with prolonged recovery periods.
  • Energy transportation impairments, such as:
    – air hunger.
    – loss of thermostatic stability.

None of the above form part of the diagnostic criteria for hEDS.

Let’s also not forget that hEDS is a genetic condition present from birth.  ME, on the other hand, is an aquired disease usually following an acute viral infection.

Conclusion

When you look at the situation in black and white I’m amazed there is so much confusion in respect to telling M.E and hEDS apart, because they only share 1 diagnostic criteria, chronic pain.   While there are several symptoms like POTS, allergies and gastro-intestinal symptoms which may appear in both diseases, when combined with the official diagnostic criteria it’s very easy to see how distinct and separate the illnesses are.

As someone who has both diseases, plus MCAS, endometriosis, severe migraine disorder and dysautonomia, I find it fairly easy to tell which symptom is coming from which disease.  I get chronic fatigue from my hEDS, but it’s nothing like the flu-like malaise and drained, sickened, unable-to-move-without-feeling-like-I’m-dying  collapse I get with M.E.  The pain from my Endo is nothing like the pain from my hEDS, which is nothing like my migraine pain, which is nothing like the tooth-ache all over gnawing pain of my M.E.

Having said all that, my gastro-intestinal symptoms could be due to anything (migraine makes me nauseous, pain makes me nauseous, MCAS makes me nauseous, orthostatic intolerance makes me nauseous, exhaustion makes me nauseous) so there are definitely overlaps, but nothing which muddies the diagnostic waters.

That’s all I can manage to write for now.  I went on a photography day out yesterday and, despite sleeping 7 straight hours, today I feel like a rag doll – my eyes are down by my knees, I have a sore throat, my dylexia is off the charts, I feel sick, I’m hot, I’m very pale, I’m a bit dizzy and disorientated, I have a headache, I’m ridiculous sleepy, but most importantly my brain function is dreadful.  All this is the classic, delayed PEM of M.E.  I also have quite bad leg, neck and back pain due to hEDS, but it’s my ME symptoms that are keeping me in my pyjamas for the entire day (and probably all of tomorrow too, without the energy for a shower despite the fact I know I smell!).

 

 

The never ending Peri

When my periods first started to change back in 2012 at the age of 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.   However, I found nothing online so started keeping a chart on my cycle length as well as notes on my symptoms and I now have another 12 months worth of data to share with you.

I’ll start off with my first chart.  I’d 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.  The red line indicates 28 days – click on each chart for a larger view.

MC2012


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 FSH level tested and it came back as “normal” which isn’t at all unusual in the early stages of peri-menopause.  However, it was in this year that my previously unknown mast cell disease exploded and I was very unwell.

MC2013


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.  By now I’d started on a low histamine diet and thankfully had stopped passing out every time I ate.  Many of my other MCAS symptoms remained, however, and continue to this day.

MC2014


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 hooha only usually lasted a day or two around my period.

mc2015


In 2016 I continued to have vaginal dryness and mood changes, but the dreadful rages I felt in 2015 thankfully disappeared.  I did still have a short fuse at certain times in the month but it was nothing I couldn’t control.  I also had some really weepy episodes, usually in the few days before my period started and by the end of the year was starting to feel quite overwhelmed.  As someone who usually has very stable moods this was unusual for me.  I didn’t know how much was down to the perimenopause and how much was down to what was going on in my personal life, ie the situations with my parents and my Mum’s drinking, so decided to see a therapist to help me work through it.  Three months later and I was feeling much calmer, so you really shouldn’t put everything down to your hormones!

mc2016


In 2017 my periods became even more erratic.  My moods had fairly much evened out, though, and I was back to feeling more like myself despite episodes of anxiety for no apparent reason which is fairly common in peri-menopause.  I still hadn’t had any hot flushes, though my sleep was definitely affected and there were times I struggled with insomnia.  I did have some wicked skipped heartbeats and palpitations, though, and in the end had this checked out by wearing a 24 hour holter monitor and it show up on the trace but was put down to peri-menopause and not any kind of heart issue.  My migraines around ovulation and menstruation definitely became worse and could last for days which was crippling.  My energy levels took a nosedive and my brain fog some days was dreadful, however this may have be due to the fact that I was borderline anaemic rather than being solely down to my hormones.  Two other symptoms I noticed this year were weight gain and very painful, itchy breasts which were checked out via mammogram and were thankfully fine.


In late 2017 I started taking iron supplements for my low ferritin levels and my insomnia and exhaustion improved.  In fact, my sleep during 2018 was the best it’s been in 25 years for which I am grateful beyond words.  I continued to struggle with weight gain despite eating the same amount of food, though I did have the rampant munchies and know I ate more sweets and crisps than I should have 😉  I still didn’t have any hot flushes, however I had some very scary episodes of feeling like was having a stroke which I put down to vasomotor issues – about 5 in one year, which doesn’t sound a lot but they frightened the life out of me.   My skin was becoming much drier and I developed jowls on my face – I now avoid mirrors first thing in a morning because I look like my Nan!


During 2018 and the early part of 2019 the trend for erratic periods has continued (ignore the months on the chart as I no longer have a period every 28 days so the months now don’t tally!).  I had my shortest cycle to date at 12 days and my first missed period and thought “hurrahh, I’m finally going to reach menopause” only for Aunt Flo to continue her visits as usual.  Bugger it.  I have been profoundly tired and often horribly brain fogged and confused again in the last year and really should get my iron levels re-checked – the more tired I am the less well I can cook and then I don’t eat as much iron-rich food as I should.  My migraines have also been the worst in years, which is so disappointing as they had settled down quite well since going on a low histamine diet.  My weight seems to have stabilized even though I’m now 10lbs heavier than I’d like to be, but I do have to be careful what I eat and certainly can’t eat the portion sizes I always have.  I’ve had a few more of the stroke-like attacks, which I still think are hot flushes in disguise, and am definitely hotter in general than I used to be particularly first thing in a morning.  My skin is now very dry and my ladygarden is very itchy (though not dry as yet).  In 2019 my joints started to constantly hurt and if I do any kind of activity I tear my ligaments.  However, I’m still sleeping really well most of the time which is the biggest blessing from all this hormone malarkey.

So, my peri-menopause seems to be trundling along at a snail’s pace and, despite the fact I will shortly be 52, there is no sign that my periods are imminently going to end.  I’m having many of the symptoms of peri-menopause, but so far they’re nowhere near as bad as I was expecting and nothing like the horror stories I’ve read about online.  They can be annoying but are manageable and it helps that I know what’s happening and that it will all eventually pass.  Everything that’s happening to me is normal and to be expected – very few women just stop their periods with no symptoms at all and I’m happy for nature to just take its course.  Howwever this all may change as the actual Menopause arrives and I’ll probably end up reaching for the Prozac and the desk fan, but so far so good!

 

HSD v hEDS

I’ve been asked to write a post on the differences between Hypermobility Spectrum Disorder (HSD) and hypermobile Ehlers-Danlos Syndrome (hEDS) and how each of the conditions are diagnosed.

Before I start, I’ll just talk a little about the new and old terminology.

  • EDS III has been replaced by hEDS – both refer to hypermobile Ehlers-Danlos Syndrome.
  • Benign Joint Hypermobility Syndrome (JHS) has been replaced by Hypermobility Spectrum Disorder (HSD).

Historically there has been much confusion between general hypermobility (HSD) and Hypermobile EDS (hEDS) and in 2017 an international group of doctors and patient groups came together to devise new criteria to help differentiate between the two.  Having said that, it’s now thought they are basically the same disease just on a spectrum and it’s possible that although you may be diagnosed with HSD at one point in time, as you age new symptoms could present themselves and your diagnosis could change to hEDS.  This was the case for me.  I was initially diagnosed with Joint Hypermobility Syndrome (now called Hypermobility Spectrum Disorder) but this was later changed to hEDS as my symptoms increased and new symptoms appeared.

When women reach their 40s and start to enter peri-menopause symptoms definitely may change.  For example I used to be hugely hypermobile, scoring 8/9 on the Beighton Score, but now I’m 50 I’m so stiff I’d be lucky to score 3/9!  So the new criteria take this into account, with the question “can you or could you ever” do the splits for example.  And of course, symptoms like dental over-crowding are most relevant to children not adults so taking a good history is very important in the diagnostic process.  So what exactly are the new criteria?


HYPERMOBILE EHLERS-DANLOS SYNDROME (hEDS)

Patients need to have ALL 3 of the criteria below:

Criterion 1: Generalized Joint Hypermobility (GJH)

Tested for using the Beighton Score.
Children, younger adults and older adults are treated differently as hypermobility decreases with age:
Children need a score of 6 or more out of 9.
Adults need a score of 5 or more out of 9.
Adults over 50 need a score of 4 or more out of 9.

However, some people’s score may be affected by surgery or, for example, an unrelated disease (my Mum has Dupytrens Contracture and can’t even straighten her fingers let alone bend them backwards).  In these cases a 5 point questionnaire is used.

  • Can you now (or could you ever) place your hands flat on the floor without bending your knees?
  • Can you now (or could you ever) bend your thumb to touch your forearm?
  • As a child, did you amuse your friends by contorting your body into strange shapes or could you do the splits?
  • As a child or teenager, did your shoulder or kneecap dislocate on more than one occasion?
  • Do you consider yourself “double jointed”?

A “yes” answer to 2 or more questions suggests hypermobility.

My experience of the Beighton Score

If I had seen a Rheumatologist not really clued up on hEDS I would probably never have been diagnosed.  I have never been able to place my hands flat on the floor with straight legs, my thumbs do not bend inwards to my wrist and my knees don’t particularly bend backwards, yet I was given a score of 8/9!  The reason being I was clearly hypermobile in other joints.  My thumbs bend outwards by 45 degrees, not inwards.  My wrists are hypermobile.  I used to be able to do the splits.  I’ve been told my whole life by doctors that I am “double jointed”.  I have hypermobile ankles.   My knees roll inwards just not backwards!  I have hypermobile toes.  I was also 42 when diagnosed, so no spring chicken.  Taking all of these non-beighton scores, and my age, into account my Rheumy decided I was clearly hypermobile and she was correct to do so.  There are photos of my joint hypermobility on my blog here.

Criterion 2: Two or More Among the Following Features (A–C) MUST Be Present (for Example: A and B; A and C; B and C; A and B and C)

Feature A: systemic manifestations of a more generalized connective tissue disorder (a total of five must be present).

  • Unusually soft or velvety skin.
  • Mild skin hyperextensibility.
  • Unexplained striae such as striae distensae or rubrae at the back, groins, thighs, breasts and/or abdomen in adolescents, men or prepubertal women without a history of significant gain or loss of body fat or weight
  • Bilateral piezogenic papules of the heel.
  • Recurrent or multiple abdominal hernia(s) (e.g., umbilical, inguinal, crural)
  • Atrophic scarring involving at least two sites and without the formation of truly papyraceous and/or hemosideric scars as seen in classical EDS.
  • Pelvic floor, rectal, and/or uterine prolapse in children, men or nulliparous women without a history of morbid obesity or other known predisposing medical condition
  • Dental crowding and high or narrow palate.
  • Arachnodactyly, as defined in one or more of the following: (i) positive wrist sign (Steinberg sign) on both sides; (ii) positive thumb sign (Walker sign) on both sides
  • Arm span‐to‐height ≥1.05
  • Mitral valve prolapse (MVP) mild or greater based on strict echocardiographic criteria.
  • Aortic root dilatation with Z‐score > +2

My experience of Feature A

  • I have been told my whole life that I have beautiful skin – I didn’t realize that other people didn’t have skin which felt velvety to the touch.
  • One of the reasons I was initially given a diagnosis of JHS and not hEDS was that my skin was only mildly stretchy, so it’s good to see that it’s now recognized that circus freaky stretchy skin is NOT needed for a diagnosis of hEDS.  There are photos of my stretchy skin on my blog here.
  • I have no striae (stretch marks to you and me!).
  • I have piezogenic papules on my heels – this is what they look like:
Photo of piezogenic papules

Piezogenic foot papules

  • I have never had a hernia.
  • I have atrophic scaring in two sites – a small scar on my forehead after a childhood fall and also on the scar from my spinal surgery.  This is what an atrophic scar looks like, it’s kind’ve creased!

Widened, atrophic, cigarette paper scar

  • I’ve never had a prolapse.
  • I had dental overcrowding as a teenager and had to have 4 of my molar teeth removed.
  • I do not have Arachnodactyly (which is long, slender fingers or toes).  In fact, just the opposite – I have short, fat, stubby fingers and toes!  Read more about the Steinburg and Walker Signs here (I have neither).
  • I have no idea if I have an armspan to height ratio of greater than 1.05 as I’ve never been tested but I doubt it – I’m 5ft 2″ and have diddly little arms.
  • I do not have mitral valve prolapse or aortic root dilation.  Both of these symptoms must be checked by having a heart scan.

So, I personally score 5 out of 12 which means I fulfill Criteria 2, Feature A.

Feature B: positive family history, with one or more first degree relatives independently meeting the current diagnostic criteria for hEDS.

I have a real issue with this being part of the criteria.  What if you’re adopted, your parents are dead or you’re an immigrant whose parents are in another country like Syria?  What if, like me, you are not in touch with your biological father?  As it happens, I’m fairly sure I inherited hEDs from my Mum however she’s 78 years old, very ill and not willing to go through the testing procedure so I can’t say for certain that she does have hEDS. 

I can’t prove that I fulfill Criteria 2, Feature B.

Feature C: musculoskeletal complications (must have at least one)

  • Musculoskeletal pain in two or more limbs, recurring daily for at least 3 months
  • Chronic, widespread pain for ≥3 months
  • Recurrent joint dislocations or frank joint instability, in the absence of trauma (a or b)
    • a. Three or more atraumatic dislocations in the same joint or two or more atraumatic dislocations in two different joints occurring at different times
    • b. Medical confirmation of joint instability at two or more sites not related to trauma

My experience of Feature C

  • I didn’t start partially dislocating (called subluxing) my joints until I was in my early forties and I’ve never thankfully had a full dislocation.
  • I’ve had chronic, widespread and musculoskeletal pain for decades.

I’m not sure if having subluxations meets the definition of ‘frank joint instability’ (though I suspect it does), but nevertheless I pass the other two symptoms and therefore fulfill Criteria 2, Feature C.

Conclusion

Based on the evidence of having 2 out of the 3 Features listed above, I pass the test for Criteria 2.

Criterion 3: All the Following Prerequisites MUST Be Met

  • Absence of unusual skin fragility, which should prompt consideration of other types of EDS
  • Exclusion of other heritable and acquired connective tissue disorders, including autoimmune rheumatologic conditions. In patients with an acquired connective tissue disorder (e.g., lupus, rheumatoid arthritis, etc.), additional diagnosis of hEDS requires meeting both Features A and B of Criterion 2. Feature C of Criterion 2 (chronic pain and/or instability) cannot be counted towards a diagnosis of hEDS in this situation.
  • Exclusion of alternative diagnoses that may also include joint hypermobility by means of hypotonia and/or connective tissue laxity. Alternative diagnoses and diagnostic categories include, but are not limited to, neuromuscular disorders (e.g., myopathic EDS, Bethlem myopathy), other HCTD (e.g., other types of EDS, Loeys–Dietz syndrome, Marfan syndrome), and skeletal dysplasias (e.g., OI). Exclusion of these considerations may be based upon history, physical examination, and/or molecular genetic testing, as indicated.

My experience of Criteria 3

You rely heavily on your Consultant to fulfill Criteria 3, so you can only hope you see someone knowledge in hEDS.  I do have fragile skin which tears and bruises easily, but this is part of having hEDS – the trick is in knowing if this is abnormally fragile or not and I’m not sure where the cut-off point is.  In the UK, suspected hEDs patients aren’t routinely offered gene testing which I personally think is a big mistake.  There are times I feel I have cross-over symptoms with Classical EDS (cEDS) and the only way to rule this out is by gene testing.

Excluding other connective tissue disorders is also not as easy as it sounds.  There is no conclusive test for Lupus, for example, and I’ve never been screened for it to my knowledge.   Even diagnosing arthritis isn’t straight forward, as I know from first hand experience with my best friend who had been ill for 2 years before finally being diagnosed with a rare form called Palindromic Rheumatism (an autoimmune arthritis) which many Doctors have never heard of let alone look for.  I peronally have had general rheumatism excluded but little else.

Again, you’re reliant on your Consultant being extremely thorough and knowledgeable in rare diseases such as Bethlem Myopathy and OI and as we all know this is usually not the case.

I therefore have no clue if I pass Criteria 3 or not as none of these other diseases have ever been mentioned to me and I’ve never been offered gene testing for other types of EDS.

Other considerations

Under the General Comments section below Criterion 3 of the new diagnostic criteria, it is stated that other symptoms should be looked for when diagnosing hEDS, though they don’t officially form part of the criteria because they haven’t been studied enough yet.  They include things like POTS, gastro-intestinal disorders, dysautonomia and chronic fatigue.


HYPERMOBILITY SPECTRUM DISORDER (HSD)

So what happens if you don’t fulfill the diagnostic criteria for hEDS but are clearly hypermobile and having widespread pain and possibly other issues?  You are now classed as being on the hypermobility spectrum and there is now a new classification called Hypermobility Spectrum Disorder (HSD) which has replaced the old Benign Joint Hypermobilty Syndrome (JHS).

There are now different categories of joint hypermobility:-
Localized (L-HSD), in which the hypermobility is confined to less than 5 joints
Generalized (G-HSD), in which the hypermobility is seen in more than 5 joints
Peripheral (P-HSD), where the hypermobility is confined to the hands and feet
Historical (H-HSD), usually when the patient is older and no longer scores highly on Beighton.

Hypermobility in and of itself is fairly common, particularly in children, and can often be symptom-less and of no consequence.  However, a diagnosis of HSD should be considered if other symptoms are present but the diagnostic criteria for Ehlers-Danlos Syndrome isn’t met.  These symptoms include:

  • Trauma.
  • Chronic Pain.
  • Poor proprioception (ie being clumsy).
  • Other musculoskeletal traits, eg. flat feet, mild scoliosis, kyphosis or lordosis (ie upward or inner curve of the spine).
  • Other issues, such as POTS, gastrointestinal problems, anxiety, bladder dysfunction.

MY CONCLUSION

Since the introduction of the new criteria in 2017 the criteria for hEDS has become more strict so it’s harder to obtain a hEDs diagnosis, but the new HSD incorporates everyone with hypermobility, which wasn’t the case before.

It is now recognised that issues such as POTS, Mast Cell Activation Disorder, Chronic Fatigue, Gastrointestinal disorders and Dysautonomia are seen more often in the hEDS and HSD population and being diagnosed with these should point a Doctor in the direction of looking for connective tissue disorders, but not enough is known about them yet to include them in the actual diagnostic criteria, which is a shame because we all know how prevalent they are!  However, papers on all these symptoms are included as footnotes in the new criteria and can be found here.

This review has only focused on Hypermobile EDS as that is the type I have – different criteria apply for other forms of EDS, such as Classical and Vascular.


Further information

You can read all about the new criteria for hEDS here.

The criteria for HSD is here.

An excellent toolkit for GPs can be found here and is actually easier to understand than the official EDS information listed above!

 

 

 

Flares

Having been diagnosed with both Histamine Intolerance (HIT) and Mast Cell Activation Syndrome (MCAS) it’s often hard to know when I have a symptom flare who the culprit is.  Acute reactions are easy – if I take a drug and 20 minutes later get a whoosh in my head, my heart starts hammering and my face goes beetroot red my mast cells are having a hissy fit, and if the same thing happens 5 minutes after I’ve eaten I know it’s my HIT at play, but the waters become muddier when I feel insidiously and chronically unwell as is the case at the moment.

I’ve talked about this before, but for the benefit of people new to my blog these are the signs that my histamine levels are high:

  • Feeling exhausted but wired and unable to relax.
  • Insomnia, either difficulty getting off to sleep or waking during the night – usually around 2 or 3am.
  • Increased urination, especially having to get up during the night to pee.
  • Sluggish bowel.  I usually poop every morning after breakfast but this becomes every other day and at random times, even during the  night.
  • Flushing and feeling hot after eating.
  • Ligaments which injure super easily and refuse to heal.
  • Back pain which is muscular in nature.
  • Muscle spasms, particularly in the gut.
  • Nausea without vomiting.
  • Itchy skin and scalp.
  • Sore throat.
  • Oesophageal spasms which cause retching.
  • Sneezing, particularly on waking.
  • Increased or decreased energy.
  • Increased or decreased appetite.
  • And my old friend hives.

I am currently having one such flare of symptoms and looking back over the past couple of months I suppose I can see why.

  • My cleaner has been off so I’ve been doing way more in the house than normal.
  • My dog walker was also off for 2 weeks so I’ve had to take Bertie out more.
  • I split my lip open and had stitches.  There’s the shock of the event, the pain, the physical trauma and the fact my poorly immune system had to rally into action.
  • I subluxed my thumb joint which has led to ligament trauma, inflammation and ongoing pain.
  • I have a throat infection.
  • I had to have an emergency dental visit yesterday due to acute inflammation of one of my wisdom teeth.
  • And of course all the usual peri-menopause and endometriosis related gubbins.

It’s no surprise I’m not feeling great.

It all starts a vicious cycle though.  I am way too exhausted to cook, and feel nauseous much of the time, so end up eating a less than low histamine and less than ideal diet.  Add to this raging hormones and ridiculous food cravings and I know my ingested histamine is high.

Wounds and trauma stimulate mast cells, which release inflammatory and other mediators, which stimulate mast cells, which release inflammatory and other mediators, which stimulate mast cells…………  In a healthy person this cycle would happen once and then stop, whereas in MCAS patients the hand-brake appears to be faulty and we just keep rolling down the hill.

Having to do more physical activity than I know is good for me has made me really tired, but due to my high histamine levels I have insomnia and am getting up in the night to pee often several times.  This makes me even more exhausted and I gradually get more and more run down and open to opportunistic viruses and infections.

It’s incredibly hard to break the cycle.  I know I should probably have some enforced bed rest, but when your histamine levels are high and you feel really wired it’s soooo hard to just lie there doing nothing!  But it does usually help, so now my cleaner is (hopefully) back and my dog walker has returned from her hols I will have to force myself to chill, use my super powers to resist my hormone-related food cravings and give my immune system a chance to switch off.

Symptoms of Peri-menopause

According to this website there are 34 symptoms of peri-menopause, some like hot flushes most of us know about and some which to me have come as a huge surprise.  So that you can all compare your Change to mine I thought I’d go through my experience of these symptoms but, more importantly, talk about the ones which I haven’t as yet had.  When you read about peri-menopause online you only really get the horror stories but it’s not inevitable that you’ll turn into Norman Bates’ evil twin – no, it’s much more likely you’ll just become a grumpy old git with a disappearing waistline 😉

Common Menopause Symptoms

Hot Flushes/Flashes

Remarkably I haven’t had these as yet, for which I am truly thankful.  However, they are actually more common in the first two years after Menopause, ie when periods have stopped, so there’s time yet!  Having said all that, as I’ve recently documented I’ve definitely been having vasomotor symptoms which feel a bit like I’m having a stroke and are massively scary – I just don’t flush.  So maybe I’m having my own, unique, version of the flushes just without the heat.

Night Sweats

I’ve had night sweats for about the past 7 years, but only in my period week.  Strangely enough, now I’m approaching Menopause they aren’t as bad as they used to be, so this symptom is again not one I’ve had huge problems with.

Irregular Periods

When I’ve been reading about peri-menopause online I’ve often seen the question “how do I know I’m in peri-menopause?” and think to myself “really?!”  If you’re in your forties and your menstrual cycle starts to change in any way, the likelihood is that your hormones are off to pastures new.  Of course there are other reasons for period changes, but when it’s peri-menopause related you kind’ve just know.  My cycles are currently all over the place, with last month’s being 40 days and this month’s being 22 days.

Loss of Libido

Hell-to-the-no 😉  In fact, there are times in the month I am so horny I could shag the dog.  Being single, of course, my rampant sex drive is wasted which seems a bit of a shame, however in reality my endometriosis is so painful sex would probably be out of the question.

Vaginal Dryness

I’ve definitely had this, but only at certain times of the month – it’s not currently permanent.  It doesn’t feel like I expected either and for me I only know it’s happening because my undies rub and irritate me and this can cause my lady garden to become sore.  A smearing of K-Y Jelly, which stings like a son-of-a-bitch when first applied, has been helpful.

Mood Swings

Over the 7 years of my peri-menopause I’ve had five massive rages however they were all due to my alcoholic Mother so would probably have happened irrespective of my hormones.  There are times of the month I can feel a bit weepy or tetchy for a few days, but then I’ve always been like that so it’s not something unique to peri-menopause.  I feel hugely thankful that my mood has so far been fairly stable, though of course this may change as the actual Menopause gets closer.

Other Changes

Fatigue

As I already have severe chronic fatigue I haven’t noticed this as a symptom anywhere near as much as if I’d been healthy.  However, a couple of years ago my fatigue became absolutely poleaxing but this turned out to be because of low ferritin stores and has improved dramatically following iron supplementation.  So if fatigue becomes troublesome look for alternative explanations – low iron is common in peri-menopause as bleeding can become heavier.

Hair Loss

I’ve never had thick hair but started losing my hair in earnest in my mid forties.  MCAD can also cause hair loss so I’ve no idea if I would have lost quite so much hair if I didn’t have that, but it’s not something I’m going to get hung up on.  Hair extensions and wigs are brilliant these days so I just bought myself some fake hair and got on with it.

Sleep Disorders

Again, because I already had insomnia due to my ME and MCAD it’s hard to know how much my sleep has been affected by peri-menopause.  I actually went through a couple of years of sleeping brilliantly, probably the best for 20 years, but now I seem to have insomnia again in particular waking at 4 or 5am and not being able to drop back off.  I just accept it as one of those things and am so used to being sleep deprived it doesn’t hugely affect my day.

Difficulty Concentrating

Yet again, I’m already completely brain fogged due to my existing illnesses and don’t think this has gotten massively worse.  When you’re not sleeping well it affects daytime concentration too, so my focusing problems are probably as a result of many factors not just peri-menopause.

Memory Lapses

Er, what was the question again? 😉  My memory has definitely gone to shit.  It was never good to start with, 25 years of M.E. brain fog has seen to that, but there are now days when it’s so bad I feel like a Dementia patient.

Dizziness

This has been one of the worst symptoms for me.  I can spend whole weeks feeling dizzy and disorientated every waking second of the day.  In fact, the second I opened my eyes this morning and the room swerved I knew today would be a dizzy day.  It’s just something I put up with and pray eases soon.

Weight gain

I have gained half a stone (7lbs) in the last year, which doesn’t sound a lot but has meant I’ve had to go up a dress size.  The reason for this is that I have the raging munchies and go through cycles where even Bert’s dog biscuits look tempting.  I have zero self-control, even though I know that once the weight is on it will be really hard to shift, and these are the times I’m glad I live 7 miles from the nearest shop otherwise I would have gained 10 stone 😉

Incontinence

Thankfully I can still hold my wee, though the fact I’ve never given birth has probably helped.  I pee for England, including having to get up at least once in the night, but don’t leak.

Bloating

The word “bloated” doesn’t do this symptom justice.  My breasts are, at times, so swollen I could float on water and I looks 5 months pregnant.  I pee, and pee, and pee and still look and feel like the Michelin Man.

Allergies

My life changed forever when my hormones started to decline and my mast cell activation took up residence.  Enough said.

Brittle nails

My nails, like my hair, have always been rubbish and I can’t see that peri-menopause has made a huge difference.  In any event, who the fuck worries about their nails?!  Get a life.  Having said that, a couple of years ago I noticed my toe nails has started to split right down the middle and the ends had all flattened out.  This is a symptom of anaemia and sure enough my iron stores were really low, so if you notice these kids of signs my advice would be to get some blood work done.

Changes in Odor

I live on my own, so I’ve no-one to tell me if I’ve suddenly started to smell like rotting fish.  I am aware, though, that body odor can change during middle age so am more liberal with deodorants and perfume than I used to be, but I think this applies to both sexes not just women – my Dad certainly has an “old man” pong no matter how often he showers.

Irregular Heartbeat

This is one symptom I can definitely relate to and is really common.  I’ve had palpitations as part of my M.E. for donkeys years but they got so bad in my mid forties I had a 24 hour holter monitor done.  I was convinced I had some kind of heart problem, but although the ectopic/skippy/thumpy beats showed up on the test they were deemed to be normal and just part of the peri-menopause.   They’ve thankfully now settled down a bit and aren’t as frequent or severe as they were.

Depression

I’m so thankful that I haven’t suffered with this symptom and mood-wise am just my usual grumpy arsed self 😉

Anxiety &/or Panic

I’m not an anxious person in general, but have definitely noticed I can become suddenly anxious for absolutely no good reason.  Anxiety can be a symptom of mast cell activation too though, so I’m never sure whether it’s my hormones or my mast cells that are playing up.  It hasn’t been too troublesome though and I just accept it as part of the process, tell myself that “this too shall pass” and try not to panic over the fact I feel panicky, which is often easier said than done.

Irritability

All I will say about this symptom is that Victor Meldrew and I must be related only in my house there’s a lot more swearing 😀

Pains

It’s been the pain symptoms of peri-menopause which have come as a shock to me as I simply wasn’t expecting some of them.

Breast Pain

Holy Mary Mother of God my boobs are sore.  Chronically, stupidly sore, all of the time.  I hardly ever wear a bra these days as they’re so uncomfortable and have been known to rub Ibuleve gel into my breasts to try and gain some relief.  It’s like PMT breast tenderness on steroids.

Headaches

My battle with migraine is well documented and is mostly hormone related.  My migraines haven’t become particularly more frequent as a result of peri-menopause, but they’ve definitely become more painful, last longer and now often include vomiting.  Along with my endometriosis and adenomyosis this is one symptom I’m praying to God will lessen when I’ve finally gone through The Change.

Joint Pain

My joints went to hell on a handcart when I first started with peri-menopause at the age of 43.  Obviously I also have hEDS, so I’ve no idea if my joints would have been so badly affected if I were healthy, but I’m definitely doing the old lady thing of “oompfing” as I get out of the chair and can no longer bend to put on my socks or shoes.  I feel like I’ve aged 20 years in the last 5.

Burning Tongue

This is another tricky symptom, because I have GERD and if acid backs up into the oesophagus and/or mouth it can cause a burning sensation so I’ve no clue if my burning mouth is due to my reflux or my hormones.

Electric Shocks

This symptom was completely unexpected, particularly as it only affects my breasts.  The stabbing, electric shocks became so bad that my GP sent me for an early mammogram last year as it’s not something widely considered to be linked to the menopause, but all was fine and the pain is less frequent now than it was a couple of years ago.

Digestive problems

I have digestive issues by the truck load already and haven’t noticed they are any worse than they were five years ago.

Gum problems

Many people in middle age start to suffer from receding gums, so I personally wouldn’t say this is down to peri-menopause, just age.  Yes I lost my first adult tooth at 48, but then my best mate’s hubby did too and he isn’t peri-menopausal although my mate says he’s definitely having a mid life crisis 😉

Muscle Tension

If you have depression, panic or anxiety as a symptom of peri-menopause it stands to reason you will notice muscle tension so I’m not convinced this is a symptom in its own right.  I also think that even some healthy women have mast cell issues during peri-menopause, with things like new allergies, hives, eczema and itching, and again muscle tension is a symptom of mast cell activation.  I have definitely noticed more muscle spasms in the past five years, but then my MCAD has gone nuclear so it was fairly much inevitable and not down to peri-menopause per se, though my hormones are probably the reason my MCAD went nuts.

Itchy skin

My itchy skin drives me bonkers some days, but it’s part of having MCAD so again it’s not a symptom I associate with peri-menopause.  Having said all that, the one symptom not mentioned in the list of 34 is dry skin, which amazes me because it’s something nearly all menopausal women notice and dry skin can also be itchy.  I’ve always had beautiful, flawless skin, it’s the only good thing about having hEDS, but I feel like my skin has aged ten years in the past two and is horribly dry and lifeless.  My whole life I’ve never had the need to bother much with moisturizer, but now I put it on twice a day otherwise my skin feels as tight as a duck’s arse.  My skin has also sagged and wrinkled at an alarming rate and I suddenly look, and feel, every one of my 50 years.  Yay.

Tingling Extremities

Having had pins & needles in my hands and feet for the better part of a quarter of a century I’m probably not the best person to ask about tingling extremities.

Osteoporosis

My maternal Gran, my Mum, her Sister and a maternal Cousin all had osteoporosis by the time they were 52 so this is something I’m probably going to develop.  On the NHS bone density isn’t usually checked until a woman is over 50 even with a family history, however as hEDS is also a risk factor I’ve already had two bone density scans in my forties which were thankfully both fine.  It will be interesting to see, however, what my next one shows in two years time as by then I should be post-menopausal.

Excluded Symptoms

There are some symptoms which, IMHO, have been left out of the list of 34.  One is dry skin which I’ve already mentioned and the other is changes to flow.  My periods don’t last any longer than they always have, but they are definitely heavier and often really clotty.  Other times the blood can be bright red, like I’ve cut myself, and I’m also more prone to sluggish brown smears/spotting both before and after my actual period.  Even if your cycles are still regular, if you’re in your forties and start noticing changes in the consistency of your flow chances are you’re starting in peri-menopause.

Your body also changes shape.  Even if your weight stays the same your waist may suddenly disappear.  I’ve always had a curvy, hourglass figure with a well defined middle but seemingly overnight my waist did a bunk and I now I’m starting to look matronly and chunky.

Something else which hasn’t been mentioned is apathy.  I don’t feel in any way depressed and I’m not lacking in motivation but some days my get-up-and-go simply gets-up-and-leaves.  Maybe this is a fatigue thing but I just can’t be arsed to do stuff, in particular housework or cooking………in fact, any of the “shoulds”.  I know I should be doing the laundry and instead I’m either sat on my lardy arse stuffing my face with Wine Gums and watching Teen Mom, or I’m in my ‘studio’ taking photographs, which is fine until I go to get dressed and realize I’ve no clean pants.  Or socks.  Or much of anything else, which turns into an excuse to stay in my jim jams and watch more telly.  Maybe getting old isn’t so bad after all 😉

Conclusion

So far my journey through peri-menopause hasn’t been the hellish experience my Mum warned me about and I seem to be doing OK.  I personally think it’s all about expectation.  By the time I was in my mid forties I expected to be starting peri-menopause so that when it happened it didn’t come as any kind of shock.  I’m gobsmacked at the amount of women I read about online who are 48 and seem surprised their periods have suddenly gone awry – surely to goodness all women expect to start The Change by their late forties, and it actually begins much earlier for many of us.

Already suffering from chronic illness also prepares you for changes to your hormones.  Healthy people who suddenly find themselves exhausted, itchy, stiff and in pain, and who develop palpitations, dizziness and insomnia, must think their world is coming to an end, but when you’ve already had these symptoms for years it’s just business as usual for the most part.  Trust me when I say I’ve been way more sick than I am now.

There are definitely parts of my transition which are crap, like my migraines and dizziness, and they have absolutely affected my life but not to the point where I feel like I can’t cope.  I’ve been hugely lucky so far in that my mood has remained fairly stable which is one of the things which worried me the most, and so far the dreaded hot flushes haven’t put in an appearance.  Of course, no-one could predict that my waning hormones would set off my dormant mast cell disease causing all hell to break loose and I was clueless as to the fact that it would impact my hEDS quite as much as it has, but my M.E. has so far been largely unaffected though I know that’s not the case for some.

I was anticipating becoming a depressed, irritable, exhausted, fat mess by the time I was 50 and although there’s still time for this to happen so far I’m just grateful I still feel my usual kind, happy but grumpy self albeit a bit thicker and saggier around the edges.  It could be worse.

The hormone bitch from hell

It’s finally happened.  I’ve turned into the exhausted bloated frazzled dippy hormone bitch from hell.  Y’know, the bad tempered middle aged woman whose husband and kids you pity cos she looks like no-fucking-fun to live with?  Yup that’d be me.

My peri-menopause is somewhere in the outer stratosphere as my ovaries desperately churn out hormones so exhausted their tongues are hanging out.  They feel beaten, like a whipped dog, yet refuse to lie down in the corner and just die.

My day started with period pain.  In fact, my week started with period pain.  It’s been 7 days of cramp riddled hell but no fucking period.  What’s up with THAT?!  Aunt Flo will no doubt arrive at 2am after I’ve gotten up to pee for the 4th time in four hours, passing clots so huge the toilet bowl will look like a blood bath.  Yes my friends, I now have periods which look like a crime scene in which I am the victim.

I have pimples.  It’s like being a teenager all over again but without the taught, lean body and hours of heavy petting.  I can’t believe my 17 year old self had more sex in one year than I’ve had in the last decade.

I’ve lost my car keys.  Again.  I go into the kitchen to look for them. Why am I in the kitchen?  Think woman, think!  Ah, yes, car keys.   Where the fuck did they go?  Hmm, I’m thirsty maybe that’s why I’m in the kitchen.  Oh, car keys!  What the hell are they doing in the fridge?  Er, why am I in the fridge?  Maybe I need to get something out for dinner tonight.

I am evil.  I can hide it until 10am when I need to get my dog into the car.  “Bertie” I call sweetly “time to get in the car baby”.  He ignores me and continues to sniff other dog’s wee on the bush at the corner of our drive.  “C’mon fluffy child, I’m late.”  He cocks his leg and moves a good foot further away.  “Bert” sounding steely, “get in the sodding car.”  He disappears round the corner out of view entirely.  I stomp off down the drive screaming like a banshee “get in the goddamn car you fucking disobedient German fucking Schweinhund!” and unceremoniously help him back up the drive with my foot, at which stage 5 Ramblers walking past my house consider reporting me to the RSPCA.

I set off into town.  I am the only person driving correctly and everyone else is an arsehole imbecile who has obviously never heard of the Highway fucking Code.  What the hell are they doing on the roads in the middle of the morning anyway, don’t they have jobs?!  Idle fuckers.

I go into Sainsburys for a pair of jeans a size bigger than I’ve worn for the past 30 years.  I only have to look at a Ginger Crunch and I’ve gained 3lbs and am so swollen with water you could use me as a beach ball.  I ignore the skinny stretch because lycra and I are no longer friends, and choose the pair with the elastic waistband which look reassuringly comfy.  I need a new bra but they don’t make them big enough.  They don’t even make a tape measure big enough.

I have frown lines between my eyebrows that 100 years of botox couldn’t fix and jowls that look like Schnorbitz.  Only Schnorbitz has more hair.  Wayyyy more hair.  I wonder if Sainsburys sell eyebrow pencils?


On my way home I drive 5 miles past the petrol station before I realize my tank is on red.  I must remember to do a “need petrol” post-it note and stick it on the hall table.  Remember Jak, petrol post-it.  Petrol post-it.  Petrol post-it.  As soon as I’m through the back door I reach for a pen.  Hmmm.  Why did I need a pen?  Was I supposed to be writing something down?

It’s 2pm and I crawl into bed for a nap.  Not a rest, an actual drool-on-the-pillow old fogie’s nap from which I wake bathed in sweat and with armpits which smell like death.  I’d dreamt I was being arrested for some heinous, but unknown, crime like forgetting to pay my council tax bill even though it’s done automatically by direct debit, or stealing invisible plans to the rights of way on the local footpath.  I wonder if my phone is bugged or the government are spying on me through my TV.

I slob under the duvet, chomping like the hungry caterpillar and binge watch 3 hours of Bake Off to combat the anxiety and paranoia.  I prefer Pru to Mary.  Mary was nice and nice people are irritating.  I forget I used to be one.