New Recipes

I did it!  I finally managed to create a crunchy carob biscuit, although I had to use oats and didn’t really want to (sometimes oats and I don’t get along too well, but so far these biscuits aren’t causing me any problems).  To get them a nice, round, thin shape I press each ball of mixture into a 7cm/3″ cookie cutter although flattening the mixture with your hand will work just as well.  Kept in an airtight container in the fridge (due to the high butter content) these stay crunchy for a week or longer (recipe in the dessert’s section)!  Mmmmmmmmm.  Instead of adding carob chips next time I’m going to experiment with substituting some of the flour for carob powder and will let you know how it turns out.  I’ve also been meaning to mention for ages that if you’re making your own carob chips and don’t want to use butter, coconut oil should work just as well, and if you don’t want to add sugar, 1 tblsp honey should work fine.

photo of crunchy carob biscuits

My next scrummy recipe is for vegetable spring rolls, which have made a welcome addition to my lunch menu.  They’re floppier than bought spring rolls, so handle with care, but really are tasty and full of nutritious veggies.  I like them dunked in my home-made sweet chilli dipping sauce.  Recipe in the lunch section.

Photo of vegetable spring roll

I’ve tried making mayonnaise 3 times in the past: twice with a jug blender and once with a stick blender, but despite adding the oil drop by drop I’ve never gotten it to set!  But I’ve found a fool-proof recipe courtesy of Gordon Ramsey which makes the mayo in a food processor, and it worked first time yayy!  Great for egg mayo sandwiches, potato salad and coleslaw amongst other things :-) .  This recipe makes quite a lot of mayo, a whole jar, and as mayo doesn’t keep long in the fridge you might want to reduce the recipe to 2 eggs and reduce the oil.  The recipe also makes a very thick mayo, and if you like it runnier just add more oil – recipe in the Sauces section.

Photo of mayonnaise

I thought I’d make some savoury sweet potato muffins for lunch, although the recipe I chose actually made more of a gooey, sweet, snack muffin – what the hell, they tasted lovely so I’ll have them for pudding instead ;-).  These are sweet potato (or squash) & nut (or sweetcorn) Muffins – recipe in the Desserts section and scroll down.

Photo of Squash & nut muffinsThe other delicious junk-food substitute meal I made recently was a chip (French fry) and egg oven-baked fry-up, but sadly I was so hungry I just ate it and didn’t get round to taking a photo ;-)  Recipe is up on the blog though in the Main course section and I promise to do a picture next time I make it!

While I’m on the subject of food, I just thought I’d pass along some ingredient substitution tips for recipes which contain foods high in histamine:

  • For soy sauce I substitute tamarind paste.
  • For a tin of tomatoes I substitute an 8oz jar of my tomato-free or red pepper sauce.  For tomato puree I thicken my red pepper sauce with a little cornflour mixed to a paste with water.
  • For vinegar I either substitute water in equal quantities (sometimes this is fine, depending on the recipe), or lemon juice if I know a very acidic taste is needed (for 1 tblsp vinegar I only use 1 tsp lemon juice, taste, and add more if needed).
  • For sultanas/currants, in things like a risotto or curry, I substitute fresh diced mango.
  • For curry powder I substitute dried turmeric or cumin.
  • For cinnamon & nutmeg I substitute ground ginger.

 

 

Sleep

Before getting M.E. I never had any problems sleeping.  If I was stressed or upset or worried I actually slept more, not less.  I LOVED my kip and needed at least 8 hours, preferably 9 and at weekends 10, to feel human.   I’ve never been able to sleep during the day, or nod off on trains or watching the telly, but my routine at night was always to go to bed around 10.30pm, read my book for about 20 mins, turn off the light and sleep through until the alarm went off in the morning.  Lovely jubbly.

The first symptom of M.E. I developed was insomnia (though of course I didn’t know I had M.E. at the time).  I’d go to sleep as usual, but wake around 1am and be completely unable to drop back off.  For someone who needs her sleep this was torture and I had no idea what was happening.  In the first two years of being ill I tried all sorts to re-establish my sleep pattern (hypnotherapy, herbal remedies, milky drinks, reflexology, massage, warm baths, aromatherapy oils, acupuncture, pressure points etc.) but nothing worked.

In 1996 I became very severe affected by M.E. after contracting meningitis on holiday in Africa and my insomnia took on epic proportions.  I had problems getting to sleep and once asleep I had problems maintaining sleep.  On average I was managing about 3 hours sleep per night, in broken 45 minute chunks.  At various times I stopped sleeping altogether.  At my worst I went 3 entire weeks without sleep, which is supposed to be medically impossible and I don’t think to this day anyone believes me.

What I discovered in these severe insomnia episodes is that the brain needs to dream.  So despite being very ill and lying with my eyes closed I was still conscious (ie. I could hear everything happening around me and if you spoke to me I’d answer) yet part of my brain would be dreaming, so I’d be in this twilight world of dreaming while waking which was really disconcerting!  I was conscious enough to know I was dreaming, but powerless to stop it.

Your body needs to sleep to repair itself and I wasn’t getting enough.  Consequently my hair fell out in handfuls and my skin became dry, cracked and started to peel off – a bit like when you get sunburned.  The nausea and dizziness were truly awful and I was so mentally confused I felt like I had some kind of brain injury.

I hadn’t become as drug allergic then, so tried every pill known to man.  I had horrendous allergic reactions to the supplements GABA and Melatonin, as well as drugs like Prozac (didn’t sleep for 4 days after one pill).  I was able to tolerate the antidepressant Dothiepin though (a sedating tricyclic) and used this alongside a sleeping tablet called Welldorm (chloral hydrate) which at least gave me a block of 3-4 hours per night, though realistically combined together they should have knocked me out for hours!  Eventually I became allergic to both drugs, so ended up on a combination of the antidepressant Zispin (mirtazapine) and the hypnotic Zimovane (zopiclone) with a sedating opiate-based painkiller (Co-dydromol) thrown in for good measure, which still only gave me about 4 broken hours. I managed to take these for about 3 years before I again became allergic.  In desperation I persuaded my GP to prescribe some benzos, starting with Diazepam (might as well have eaten Smarties!) and progressing through them all before ending up on Nitrazepam which didn’t work either.  There were some nights where I was so overwhelmingly desperate to sleep that I took a combination of all the drugs at once (one night I took 10 different sedatives/painkillers) and didn’t care a jot if I died.  And d’you know what?  I still didn’t sodding sleep!!!

There weren’t as many sleep clinics then as there are now, but I did find one in Edinburgh (I’ve no idea how I thought I’d get there as I was so ill I couldn’t even walk to the loo at the time!).  I wrote to them outlining my situation and they replied saying they only treated sleep apnea, so that was that.  Out of all the myriad of symptoms I’ve had over the last 20 years insomnia has been the worst and the one that has made me contemplate suicide the most.

As my M.E. started painstakingly slowly to improve in about 2002 my sleep did eventually start to return.  In 2006 I became allergic to all the drugs I was on following what I now know to be a severe mast cell reaction to having chiropracty on my back, and I was beside myself at not being able to take any of my sleep meds.  However, despite some very rough months (withdrawing suddenly from antidepressants is not to be recommended!) it turned out to be a blessing in disguise and eventually my sleep was better off the drugs than on.

I’m now able to get off to sleep normally, although I do have to listen to a talking book on my ipod to get my brain to switch off (I set the sleep timer for 30 minutes but usually drop off after about 10 minutes).  I do still wake in the night, often around 1am and again around 4am, but again I put my ipod on and usually get back off after about half an hour or so.  I’ve always woken between 6-7am, no matter how much or little sleep I’ve managed to get, and that’s still the pattern today, but at least I’ve managed about 5-6 hours sleep in the meantime for which I’m eternally grateful.

I did discover, though, that I have a range of parasomnias which are still affecting the quality of my sleep.  As a child I apparently sleep walked, but grew out of this by the time I went to school.  As a teenager I developed night terrors and would have horrendous nightmares which had me screaming and running round the bedroom trying to avoid giant spiders I was convinced were real ;-) .  As an adult living on my own I’d no idea my sleep walking had returned until I came downstairs one night to find a pile of burned matches on the coffee table in my lounge, which totally freaked me out as I had no recollection of being up in the night and I could have set the house on fire!  It was then I installed a burglar alarm with door alerts which I use at night-time, in case I wander outside in my sleep!  I also have a rare form of parasomnia called Somniscription or sleep writing.  I regularly wake to find post-it notes full of ramblings stuck to my bedside table, some of which I can vaguely remember writing in my sleep and others I have no recollection of.  It’s a good job I sleep on my own is all I can say ;-) .

In 2011 I was well enough to get to Newcastle for an appointment with my ME specialist (it’s ironic that when I was really ill I was too ill to see him).  We discussed my insomnia and parasomnias and he referred me to Dr Anderson, a neurologist who runs a sleep clinic.  I stayed overnight for a sleep study, which confirmed my sleep was poor.  Her diagnosis was “you have ME and chronic pain, I’d expect you to sleep badly” and when she tried to prescribe drugs for me to take (ones I’d already tried and was now allergic to) and I told her I couldn’t tolerate them she told me that if I wouldn’t do anything to help myself there was nothing she could do.  I could have cheerfully killed her.  If the test shows I sleep badly now I’d love to’ve had a sleep study done when I was at my worst!

Of course, I now know that histamine is a stimulating neurotransmitter which in some tests has been shown to peak at around 3am.  As I’ve mentioned before, I know I’ve had mast cell issues my whole life so the fact I had arousal issues as a small child, during puberty, and since getting M.E. (which I think is a mast cell disease) my parasomnias and insomnia make much more sense.  The two antidepressants I took which helped my insomnia both also have anti-histamine properties, although actual antihistamines I’ve tried have no effect on my sleep whatsoever.  When I was really suffering with insomnia I so wish I could have gotten a sleep expert interested because I think I would have made a good case to study, but now I’m hoping my sleep never gets that bad again and the opportunity for an expert to look at my almost total sleep deprivation has sadly been lost.

Oesophageal pain

As I’ve mentioned in several recent blog posts my reflux seems to’ve gotten out of hand lately for reasons I can’t put my finger on.  I have constant pain where my oesophagus meets my stomach, a bit like I have a sharp piece of toast stuck.  The pain radiates to my back and goes up either side of my spine from my lower shoulder blades right up to the base of my neck.  It’s a stinging pain which nothing seems to alleviate.  When it’s really bad I also get burning, stinging pain down the outside of both arms right down to the elbows.  Thankfully I don’t have any stomach pain, but eating is no fun.  Drinking or eating anything warm is acutely painful and I’m fairly sure my oesophagus is inflamed or ulcerated.

Unbeknown to me, I had silent reflux for several years which resulted in acid being inhaled into my lungs giving me a chronic cough which was mis-diagnosed as allergic asthma.  Then in April 2012 my stomach really started playing up.  I had an endoscopy that year which showed very little, other than a dozen benign stomach polyps and some inflammation.  It was decided I had GERD and I was placed on an H2 anti-histamine (originally Zantac which gave me awful nausea and brain fog, so I switched to Tagamet which I tolerate really well).  It reduced the heartburn and upper epi-gastric/back/arm pain but didn’t cure it.

I’ve now followed all the usual recommendations for GERD for nearly 2 years:

  • My bed head is raised on 4″ bricks.
  • I leave 3 hours after eating my dinner in an evening before lying down.
  • Most of the foods to avoid on an acid reducing diet are things I can’t eat on a low histamine diet in any event, eg. tomatoes, alcohol, most spices, citrus fruits, fizzy drinks.
  • I’ve never smoked.
  • I’m normal weight for my height and build at 8st 4lbs (117lbs/53kgs).
  • I eat 3 small meals a day, and 2 snacks inbetween.

In addition I’ve increased to the maximum dose of Tagamet (4 x tablets per day) and inbetween doses I take Gaviscon Advance which means I take acid suppressing drugs every 2 hours.  Yet the pain just gets worse and my chest tightness and chronic cough are back.

The next step would be to take a proton pump inhibitor (PPI) like Omeprazole, but I’m reluctant for 3 reasons:

  1. I probably won’t be able to tolerate it.
  2. The Tagamet I’m on currently is one of the drugs recommended for Mast Cell Disease being an anti-histamine, so is preferable to a PPI which has no action on stomach mast cells.
  3. I’m only 46 years old and PPIs are the last drug left for me to try.  If the pain gets worse in 10 years time I’ve no drug options left.

Nothing I eat makes it worse or better and the pain is so acute when I lie down (even sleeping on a slope!) that it’s kept me awake at night for weeks.  Consequently I’m getting more and more tired and miserable, leaving aside the fact that long-term reflux puts me at risk for Barrett’s Oesophagus and ultimately cancer.

I can’t get an appointment to see my GP until 14th May, when I’ll ask for a referral back to see the hospital Gastroenterologist.  I will then have to wait about 4 months just for an appointment.  I’m dreading having to have another endoscopy if I’m honest, as my last one had to be done without sedation (I’m allergic) and the force used to get the camera down set off my dermographism and later that night my throat was so swollen I had to ring the out of hours doctor.  However, if I do end up having another scope at least I now know about my mast cell issues and can ask for some samples to be taken for staining.  In the meantime I guess I’ll have to at least try a PPI because at times I don’t feel like I can live with the pain for another second.  I wish sometimes The Powers That Be, and my body, would just cut me some slack and give me a break and some time off.

Weekly roundup

I was putting my (pre-prepared in the morning when I have most energy) dinner together last night when I started feeling a bit strange.  I realised that every time I moved the room spun a little.  I managed to eat my meal feeling like I was on a moving ship before retiring to bed, only able to listen to the TV rather than actually watch the moving images.  I have these dizzy spells now and again (which can vary in intensity from mild, as this one was, to so severe I feel like I’ve spent a night downing tequila slammers - I wish!) and have no clue what they are or where they come from.  During my worst M.E. years they were frequent, but have thankfully become much less so as I’ve improved.  Still not nice though and I’m spaced out and feel weird this morning.  I took my blood pressure, which was fine, although I felt really hungry and still feel hungry this morning, so maybe my blood sugar is a bit off or I’m about to get a migraine (feeling abnormally hungry is one of my migraine warnings).

Speaking of blood pressure, I’ve now completed a whole month of readings and found something surprising.  The first day of my period my blood pressure was 119/39 (my diastolic was so low it was off the chart – a normal reading is 80!).  This gives a pulse pressure of 80 when it should be 40.  So, no surprises I feel totally crap during The Curse!  Be interesting to see if this is repeated next month.

My hives are back.  It’s no surprise, because I’m also sneezing, my eyes are sore and dry and my skin is itching.  The Birch pollen is obviously now in full flight and my body is rebelling.  I’m on Zyrtec, and using steroid cream on the hives, but they’re getting worse not better!  Nothing I take has any affect on them if I’m honest, so I just put up with them for a few weeks and try not to scratch my arse in public ;-) .

I spent a whole morning trying some new recipes out last week, including home-made Bounty bars, Mexican bean wraps and a vegetable Cobbler, which were all inedible.  It’s soul destroying to spend 3 exhausting, painful hours cooking only to end up with a bowl of Cornflakes for your dinner!  I’m determined to get the Bounty bars to work though, so watch this space ;-) .

I woke the other morning, got dressed, and took my dog out on my mobility scooter (I have a dog walker but can only afford week days so at weekends I take him myself).  As I trundled up the road I realized my leg was stinging.  Really stinging.  To the point where I wondered if I’d actually been stung by a wasp or something.  I couldn’t wait to get home to roll up my skinny jeans and find out what on earth was going on, and this is what I found:

Photo of scratchesWTF?!  All I’d done that morning was lie in bed, then pull my jeans on.  If I’d scraped my leg on something sharp enough to cause a wound this big it would have hurt and I would have noticed.  I have no clue where these huge scratches came from, and it took the rest of the week for them to fade.  I’m starting to think I share my bed with a poltergeist!!

Oral & Dental

Like many people with Ehlers-Danlos I have my fair share of dental issues.  When my adult teeth had finished coming through it was obvious I had quite severe dental overcrowding, so at the age of 11 I had four of my molar teeth removed.  I wasn’t given a brace (kids weren’t in those days, at least in the UK) and I was just lucky that my front teeth grew reasonable straight afterwards, though they’re not perfect. By the time I was 15 all of my back teeth were filled.  I have to admit, brushing my teeth wasn’t one of my favourite past-times (I always had something better to be doing) and I was continually told off for not brushing my teeth more often (it got done once a day and to me that was more than enough!).  I now know that even if I’d brushed my teeth ten times a day they would still have been soft and needed filling.  I never had any problems with the local anaesthetic injections, which always worked fine, but of course this was to change when I developed M.E. and my drug reactions began.

Floss wasn’t invented until I was in my late twenties and by then I was trying to look after my teeth more.  The problem was, every time I flossed my gums bled.  I was told to keep at it, my gums would toughen up, but of course they never did.  As soon as I found out I had EDS, and that my gums were super fragile, I stopped ever trying to floss – my gums don’t bleed half as much but of course they’re not as clean either.  I’ve looked into water flossers, but I know myself really well and admit that the novelty would last all of a week before it would be put in a draw and never seen again ;-) .

I do have quite severe gum inflammation though, almost all the time.  It’s painful, makes eating difficult and causes tooth sensitivity.  I’ve now religiously cleaned my teeth twice a day for many years so I’m not sure if it’s down to plaque (even though I have my teeth cleaned every 6 months at the dentist) or skin fragility. I started getting tooth sensitivity when I was in my mid thirties and have used Sensodyne toothpaste ever since.  There are days when it’s really quite bad and eating ice cream stopped being pleasurable about five years ago *sob*.

I also have early receding gums, which my dentist told me was due to brushing my teeth too vigorously.  But I knew I didn’t brush my teeth hard – I only have a child’s soft toothbrush and hardly use any pressure.  Finding out I had EDS validated this and now he’s stopped telling me off ;-) .  My Mum, who I’m fairly sure I inherited my EDS off, lost all her teeth by her mid fifties due to receding gums  (they also told her she’d brushed them too hard!) so that’s something to look forward to, not.

I’m currently facing the possibility of a root canal on one of my molars.  Due to my drug reactions I haven’t had any kind of anaesthetic at the Dentist for about 15 years now and have all my fillings done without any drug intervention which, remarkably, has been fine and not painful in any way.  But a root canal is a whole other kettle of fish and I absolutely need my gum numbed.  I’ve never had a mast cell reaction to local anaesthetics, but it’s still a scary prospect.  My Dentist is also nervous, I can tell, so is going to try removing my current filling and putting a dressing on to see if he can get the tooth to calm down before we embark on the journey that is root canal hell.  I’m not even sure I’d be able to open my mouth long enough to get one done – three minutes for a check-up and my right jaw joint is in purgatory.

About ten years ago I started to get blood blisters on the roof of my mouth.  The first one was really quite scary.  I woke to find this huge, purple lump about the size of 10p and had no clue what it was.  It burst when I ate my breakfast and it felt like my mouth was literally filled with blood, eughhh!!  I only get a couple each year, so I haven’t even mentioned them to my GP or Dentist, and just put them down to fragile skin.  I’ve never been bothered with regular mouth ulcers though, so am thankful for that small mercy.

I started having subluxations in my right raw joint about three years ago.  I sleep on my left side, and I think this pushes my right jaw askew in my sleep.  I wake every single morning with the beginnings of a migraine due to pain from my jaw going up into my ear and then up into my eye and temple.  I’m currently on the waiting list to see the hospital orthopaeds to see if they can make me some kind of brace to stop this happening.

During my bedridden years I had huge problems chewing and swallowing.  I simply didn’t have the energy to chew much of the time, which is fairly common amongst people with severe M.E., and I lived for months at a time on liquid diets.  As I’ve improved, though, this is thankfully no longer an issue.  However I do still have some swallowing difficulties.  I feel every day like my tonsils are swollen and/or my throat is sore (a common M.E. complaint) so every time I swallow it’s like having Strep throat which, after twenty years, you’d think I’d be used to but….nope…..it still sucks.  And for about fifteen years now I’ve had oesophageal spasms.  I can wake up some mornings and I just know I’m going to have an hour where my gullet goes into spasm and I’m going to spend some time retching.  I don’t feel sick, it’s purely a muscular thing, and is seriously no fun.  I don’t know if this is M.E. related (it only ever happens when I’m having a bad M.E. day), or EDS related, or down to my misbehaving mast cells - not that it matters I guess.  It’s really unpleasant and all the retching makes my stomach hurt!  I used to be able to take a muscle relaxant which really helped, but I became allergic so now I just dry heave and get it over with.  Super.

As a treat to myself when I turned 40 I had my teeth bleached (I didn’t know about my EDS or MCAD then!).  I’m a very smiley person (yes, I know you all find this hard to believe ;-) ), receive lots of compliments about my smile, and I didn’t want to start being self-conscious about smiling due to my teeth being all yellow and yucky.  I just had it done at home, using trays made up by my dentist, though I had to use the bleach for sensitive teeth as the regular stuff made my teeth ache!  I used the bleach every night for 6 weeks and I just wanted to say it all went really well :-) .  My teeth were sensitive for about a month afterwards but this did settle down, and for someone horrendously chemically allergic I didn’t react in any way to the bleach.  Knowing everything I know now about my teeth and mast cell disease I probably won’t do it again, but I just wanted to mention that it went fine for anyone who’s thinking of having it done.  And I can say “cheese!” with my newly cleaned, slightly-less-yellow-if-not-altogether-pearly whites.

Letting go

The past few days I’ve been stewing over the fall-out I had with my former friend back in February (for those not in the know we’d been friends for many years, the friendship went down the toilet, she had a go at me for not saying publicly on my blog that she was a great friend, so I wrote and told her a few home truths including the fact that actually she wasn’t a great friend, and she put my private email on Facebook for 200 people to see and comment on (without my knowledge), some of whom I also knew and who then unfriended me).  I thought I’d let it go, but for some reason it’s surfaced again and I just can’t get it out of my head.  I woke this morning with such rage about it I felt totally overwhelmed.

My Mum is really poorly again and is currently on antibiotics for a chest infection.  Any kind of infection could kill her, so it’s been a tense week.  I feel so helpless, watching her gasping for breath every day.  Unable to eat.  Unable to sleep.  Distressed, exhausted and miserable.

I was on my way to see her this lunchtime when I got stuck behind 3 cars, who were all doing 20mph behind a tractor.  Fair enough.  But they were on a straight road with no oncoming traffic.  So in frustration I overtook them, only before I got to overtake the tractor a car came round the corner the other way.  So I had to squeeze infront of the first car. Who pipped his horn at me like I was about to kill a child.  Today, it was the last straw.

I pulled into the first car park I could find (which happened to be my local B&Q), got in the back seat with my dog where the car glass is tinted, and absolutely sobbed my heart out.  I didn’t just cry.  I had a serious meltdown.

I don’t usually do crying.  When you live alone there’s not much point.  There is no-one to comfort you.  No-one to wipe away your tears.  And no-one to make you a brew when you’re all done.  All crying does is wear you out and give you a stonking headache.  But today it wasn’t a choice.

I must have sobbed for 20 minutes, with the snot dripping off my chin end (I couldn’t find a tissue) but then I had to pull myself together, because I was on my way to see my Mum and couldn’t turn up upset.  Unfortunately I’m one of those people who, when they cry, their whole face swells up and goes blotchy, beetroot red.  So by the time I got to my Mum’s I’d concocted a story about forgetting to take my antihistamine and this had made my hayfever go bonkers (luckily, I woke with an outbreak of hives this morning so I could show her that as proof).  I’m not sure she really bought it, but thankfully she was too ill to care.

I’ve been thinking a lot about why I feel such rage about the incident with my friend.  I don’t give a crap that we’ve fallen out.  When I had my mast cell appointment in London in October it was the biggest thing I’d done in 20 years.  Yet I didn’t receive a single good luck message from her beforehand.  There was no text message to make sure I’d got on the train OK or had arrived at the hotel alright.  There was no offer of help, despite the fact her husband works in London and they only live a short commute away.  And I didn’t hear from her for weeks after I got back to see how it had all gone.  I got more support and offers of help from you all on my Blog who I’ve only just met, than I did from someone who considered me one of her “closest friends”.

I think the thing that’s really hurt has been the unfairness of it all.  That 200 people can sit in judgement, hearing only the case for the prosecution, not even tell the defence that the trial is taking place, then convict the defendant in their absence and without a chance to put their side of the argument.  Some of these people didn’t know me from Adam.  But some of them had been my friend for years, yet convicted me of being an evil monster without any of them even contacting me to ask what had happened to cause me to write the email.

I don’t do well with injustice and unfairness.  It’s been a theme throughout my life. My biological father was distant and really didn’t have much to do with me, yet when I told him he’d been a bit of a rubbish Dad when I was 21 I was cast aside from my entire paternal family.  I was angry for a long time at the unfairness of being blamed for simply being honest about his poor parenting skills.

When I got M.E., I was given a mental health label and accused of being lazy and depressed.  This time I was blamed for catching a disease that no-one even knows the cause of.

When I struggled with my chronic and severe physical pain, yet all the scans and tests were negative, I was told I was just “sensitive” to pain and attention seeking.  Blamed for having a genetic disease no-one even bothered to look for.

When I became allergic to drugs I was completely disbelieved, told I was just a panicky person, and that if I wouldn’t take the drugs I obviously didn’t want to get well.  Being blamed for anaphylaxis really takes the biscuit.

Then I was blamed for not including my former friend in my Friendship blog post, but I only excluded her because she was an increasingly shit friend that I barely ever heard from and had felt increasingly hurt by her thoughtlessness about my personal situation.  Then I got blamed by 200 complete strangers for pointing out how I felt.

OK Universe, I get the message.  Life is unfair.  You can stop smacking me round the head with the concept now ta very muchly!

Two years ago this former friend lost her Mum.  It’s horrendous to lose your Mum, though surely not totally unexpected by the time you’re in your eighties, plus I’d been told they weren’t particularly close and in fact my friend had always told me she dreaded her Mum ringing or visiting because she didn’t understand her illness.  I, on the other hand, am really close to my Mum.  She has been my best friend my whole life.  She’s the only person on the planet who really gets me.  She has been the only person I’ve been able to depend on my entire illness.  And I’m watching her die, slowly, painfully, agonizingly, struggling for every breath, panicking, and unable to do a thing for herself.  I didn’t ever say in my email to my former friend that she shouldn’t grieve for her Mum (though after 2 years if she’s not moving on she needs some counselling).  But am I being totally unreasonable to expect that she doesn’t mention it every single time she contacts me?  Am I such a bitch for not wanting to be faced with her grief every single time I log on to Facebook?  Is it just me that thinks it’s grossly insensitive to go on and on about her grief when my mum is terminally ill and I’m struggling to come to terms with that?  If she needs to talk about it, fine.  Just show a little understanding and do it with someone else and not me.  To be blamed by my friends for my pain and sorrow, and for not currently being able to cope with someone else’s 2 year old grief, seems incredibly harsh.

My Mum’s long battle with illness has been tough.  Just because I don’t go on Facebook telling the world about my personal life doesn’t mean I don’t have one.  And just because I don’t talk about my personal life in emails to my sick friends, because I don’t want to burden them with my problems, doesn’t mean I don’t have any.  I feel such hurt that I would be ostracized for not sharing my need publicly, as my former friend constantly does.  But I’m going to have to let it go.  Just like eventually I’m going to have to let my Mum go.  But that doesn’t mean it all doesn’t hurt.

Me and my Mum

Me and my Mum

Weekly roundup & blood pressure

Just for my own amusement I’ve been keeping a track of my blood pressure.  I do it at roughly the same time each day (8-9pm), while sitting upright and relaxed in bed but obviously with my legs raised.  A ‘normal’ blood pressure is considered to be 120/80, but my average for the month is 110/53 (my pulse is normal at 73).  I’ve had a couple of weird heart-beat episodes during the month which has raised my systolic to 129 and 122 respectively but my diastolic never gets above 60 (the lowest reading was 42).

photo of blood pressure monitor

 

The difference between the systolic pressure and the diastolic pressure is called the pulse pressure.  A normal pulse pressure is around 40, whereas mine is consistently 55-62.  A widened pulse pressure is considered an important indicator of poor heart health, and most people with a pulse pressure of 60 or greater are packed off to the cardiologist for investigation!  However, all the studies assume you have a widened pulse pressure due to rising systolic pressure (ie. hypertension/high blood pressure), not falling diastolic pressure (ie hypotension/low blood pressure)!!  Low blood pressure is never considered to be a problem, but surely it has some significance?  How is it good for the heart to have a stronger contraction than relaxation?  An imbalance like that must affect functioning I would have thought, though I admit I’m no Cardiologist ;-) .

I haven’t taken my blood pressure when sitting and standing, as I’m going to the dysautonomia clinic in June and they’ll do all that, but I just wanted to do a baseline reading to see what is normal for me.  I exercise every day, eat plenty of salt, wear compression socks, and drinks lots of fluids, so it’s clearly not a lifestyle issue.  Maybe I’m just really healthy, after all having low blood pressure is considered a good thing!  Or maybe not ;-) .  Be interesting to see what the POTS clinic says in the summer.

As mentioned in my last weekly roundup I’m back on Ceterizine (Zyrtec), an H1 anti-histamine, for my hayfever symptoms and it does seem to be helping.  My eyes are still suffering, but the sneezing and nasal congestion have stopped and I don’t feel as tired, yayyy.

I don’t seem to’ve mentioned my Ehlers-Danlos much in recent posts and that’s because it’s been quite good lately!  I’m not using any of my finger splints or my back brace, though I do still wear my SI belt if I’m going to be walking my dog.  I did go over on my ankle last week when walking on some rough ground and strained the ligaments, but I strapped it up for a few days and all is fine now.  The only thing that’s really been playing me up is my right hip.  It’s now so stiff I struggle to get in and out of the car (I have to lift my leg in), or to stand up from a crouching position (why do shops put things down so low on shelves?!).  I strained/sprained my SI joint again last month so it could be as a result of that, or it could be the actual hip itself, who knows?  If it doesn’t improve soon I might have to consider using a stick so that I have that for leverage/support when bending and straightening back up.

My nausea has also been really good this month and I actually think it’s the Zyrtec that’s helped.  I know this sounds bizarre, but an interesting personal account I read in 2012 by sufferer Paul Robinson says that an H1 antihistamine cured his gut issues!  He was told he had urticaria in his GI tract and I can see why this would obviously be helped by an H1 blocker.

That’s the good news.  The bad news is that I’ve had constant reflux for an entire month, ever since my last period which was a humdinger.  My period is due again in the next week and ever the optimist I’m hoping it might right itself ;-)  There’s no rhyme or reason to the acid so I can’t find a way of alleviating it.  Yesterday was Mother’s Day so I took my Mum out for lunch.  I had a huge meal, including pudding and all sorts of foods I shouldn’t really be touching like tomato ketchup, and had no heartburn at *all*.  At 8pm last night I was getting a bit peckish so decided to have 2 slices of toast and I’d barely finished eating it before the pain started :-/  So much for the “don’t overfill your stomach” theory!  In fact, my reflux is often worse when my stomach is empty (which is my excuse for snacking all day long and I’m sticking to it ;-) ).

The past two months have been a bit mental, with my Mum’s heart attack and my dog’s operation and following complications.  I’ve felt a bit like I’m drowning and my stress levels have been quite high (which doesn’t do my mast cells any favours).  Being a Virgoan I’m quite anal and orderly and my life just lately has been anything but.  So I decided to sit down and have a look at how and where I was spending my time.  I’m not surprised I’ve felt overwhelmed because there were simply not enough hours in the day to achieve everything I was trying to do!  So I’ve devised a schedule where I can get my jobs done but which also incorporates plenty of rest and relaxation time and I feel less pressured already.  I won’t actually stick to the schedule (today I’m in bed with a hormone-related thumping headache) but that’s not the point – the point is to feel more in control of my life, even if it’s only in my head ;-) .