Misbehaving Mast Cells

I woke up at the weekend with huge hives on my butt.  I’d been expecting them.  Stress is one of my biggest mast cell mediator triggers and I’ve been under a shed load of stress in recent weeks (the reason why stress causes mast cells to degranulate is briefly covered in my Canary Post).

I received my MCAD diagnosis four years ago now and I’ve come to recognize most of my mast cell triggers.  Some, like pollen release in Spring, I can do nothing about although I take precautions to minimize the effects like wearing sunglasses outdoors and not leaving all my windows wide open, while others like high histamine foods I can more successfully avoid.  Acute stress, like my Mother being suddenly unwell, is something we all have to deal with at some time or another and something we just have to manage as best we can.  While my Mum was hospital this included days where I stayed at home and rested instead of visiting her (the guilt was awful, especially as it meant my poor Dad, who was also exhausted and stressed, had to visit twice in one day), making sure I still ate well (tricky as I can’t just buy a sandwich or meal out, so had to be super organized to always take home-made food with me) and finding ways to chill out despite the chaos (I find listening to talking books relaxing and non-taxing and was something I could do on my long drives to and from the hospital).

There are two types of mast cell activation: acute and chronic.  Acute mediator release is severe and blatantly obvious and thankfully only happens for me when I take certain most drugs.  Chronic mediator release can be much more tricky to detect and it took me a while to know the signs that my mast cells were misbehaving.  Symptoms will be different for all of us, but my tell-tale signs of chronic mediator release are:

  • Insomnia.  I’m exhausted and go to sleep fine, then wake up several times in the night and struggle to get back to sleep.  This is usually accompanied by parasomnias, in my case nightmares, sleep walking and sleep writing.
  • Needing to pee more, particularly during the night.  When my mast cells are calm I never need to get up in the night for a wee, but when they are releasing I get up between 2 and 6 times.
  • Feeling either unnaturally exhausted like I’ve been drugged, or unnaturally hyper.  I prefer the hyper cos I get all sorts of jobs done with energy I don’t usually have 😉
  • Sluggish bowel.  I usually go for a poop every day after breakfast (I know, TMI 😉 ) but when my mast cells are playing up my bowel stops working.  This is the opposite to most people’s experience of diarrhea.
  • Having a bunged up nose.
  • Sneezing for no reason.  And I really mean sneezing, which can go on and on……and on.
  • Back pain, which feels muscular in nature.  One of the biggest surprises of starting a low histamine diet was a reduction in the back pain I’d had since childhood which, when my mast cells are releasing, comes back.
  • Increased joint pain, which again for me feels muscular.  When my mast cells release, the mediators definitely make my collagen more stretchy/weak which makes the ligaments which holds my joints in place painful.
  • Itchy skin and scalp, without a rash.
  • Nausea.
  • Muscle cramps, particularly stomach.
  • Retching/oesophageal spasms, but not vomiting.
  • Increased reflux.
  • Increased cough and chest tightness, which may be due to the increased stomach acid mentioned above, or may not (I don’t have asthma).
  • Itching on the outside of my ears, which sounds trivial but drives me bonkers.
  • And eventually hives on my butt, which are always the last symptom to appear.

The biggest tells for me are the insomnia, peeing during the night and sluggish bowel which are sure signs my mast cells are having a hissy fit.  I can usually identify a reason and do something to change the situation, though there are times they misbehave for no apparent reason which is scary as I then have no way of controlling them.

Triggers will again be different for all of us, but my obvious ones are:

  • Drugs, which as far as my mast cells are concerned are The Devil.
  • Stress.
  • Doing too much.
  • High histamine foods.
  • Menstrual and menopause hormones.
  • Seasons – Autumn being particularly bad (which isn’t mould related because we have mould all year round here) and a warm, sunny Spring usually being particularly good despite the fact I’m allergic to spring pollens (work that one out!).
  • The metal Nickel, which gives me eczema.

I’m sure I probably have other triggers that I haven’t identified, but they can’t be that vital if they’re not causing me easily recognizable issues.  I definitely have a problem with being too hot or cold, and having a hot bath or shower brings me out in an itchy rash but I love my baths and they help my joint and muscular pain, so much so that I’m willing to put up with some transient itching which usually only lasts twenty minutes or so.  Being too cold, on the other hand, makes me feel fluey and unwell and gives me horrendous brain fog which can last until the next day.

Due to my very severe drug allergies I, for the most part, don’t have the option of managing my mast cell disease with medication.  My management strategy therefore consists of:

  • Removing or reducing the trigger, which is sometimes do-able and sometimes not.
  • A wide, balanced, but low histamine, diet which is organic/chemical free whenever possible.  This has been my literal life saver.
  • Taking H2 antihistamines for stomach acid – I’m currently not reacting to Famotidine though this may change in the future.  I have actual panic attacks worrying about becoming allergic to my H2 meds because I have such severe GERD that without them the pain makes me suicidal.
  • Taking small amounts of H1 antihistamine in Spring for hayfever symptoms – I have issues with H1s, sometimes reacting to them and sometimes not, so I avoid unless absolutely necessary.
  • Trying to get enough rest and not over-do it.
  • Trying to do some gentle walking every day, which due to my EDS and M.E. isn’t always possible but is beneficial on many levels when I can manage it.

I look on with envy at people who can tolerate Sodium Chromoglycate, supplements, Benedryl and all the other popular mast cell treatments.  Trust my mast cells to have a particular dislike for the very things which would ultimately lead to their demise – they’re wiley buggers I’ll give them that.

Recognizing my mast cell triggers has given me a feeling that I’m more in control of the situation, though whether this is actually true or not is open for debate 😉  The one thing I’ve discovered about mast cell disease is that it’s an ever changing entity and the whole shebang can alter literally overnight.  So, like any other aspect of life, I just take it one day at a time and am just thankful when I wake up and today is a good day 🙂

 

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Mobility Aids

When I was almost totally bedridden with M.E. going out of the house was torture.  Just being upright made me feel like I was dying and, once outside, the light, sounds and smells of the outside world were an actual assault on my very poorly brain.   The energy needed simply to get dressed had almost seen me off, leaving me with no reserves, so when I absolutely had to leave the house I used a wheelchair.

The experience had both positives and negatives.  Positive in the fact that, without the wheelchair, I was completely housebound but negative in the fact that I had no independence and was at the mercy of whoever was pushing me.  They often went at a pace I wasn’t comfortable with and stopped to chat to people they knew but I didn’t.  On the very rare occasions I went to the shops I couldn’t see any item on a shelf higher than waist height (a particular problem in supermarkets) and found being in a wheelchair a very isolating experience as it’s almost impossible to chat to whoever you’re with.  The reaction of the public was to be expected I guess.  Many people talked to my Carer, treating me like I was invisible, and the rest talked to me like I was mentally deficient.  Even my Mum, who was usually the pusher, at times treated me like a child.  I remember being in B&Q once and we were struggling to find an item so she said to me in a very loud voice “ask the nice gentleman over there Jak” like I was five and being encouraged to speak to strangers.  I could have throttled her.

My GP, otherwise supportive, didn’t want me using a wheelchair.  I was capable of walking so in her eyes I should just crack on and do it.  She, of course, had no idea the effects walking had on me or the hours, sometimes days if not weeks, afterwards where I lay on my bed feeling like I’d had 5 rounds of chemotherapy – puking, shaking, unable to think or speak and so weak I could barely breathe or open my eyelids.  She warned me that by using a wheelchair to get around I’d “go off my legs entirely”, not understanding that I was virtually “off my legs entirely” to start with hence the need for the mobility aid!  She wasn’t the one who had to live with my disease, or the consequences of walking around, I was so I promptly ignored her.

I have to admit using a wheelchair was a necessary evil but not an experience I want to repeat any time soon, so when I started to see some improvement in my M.E. I bought myself a small mobility scooter.  Now I could go out on my own, whenever I liked, at a pace I liked and to wherever I liked and it was brilliant.  It was obvious to the public I was mentally competent so they talked to me like a regular grown up and I found that other scooter users waved or stopped for a chat, albeit most of them were over 70.  The only negative was when I got off my scooter, for example if a shop wasn’t scooter accessible or if I needed to use the public toilets.  If you use mobility aids many people expect you to be paralysed or totally unable to walk, so I did get some peculiar looks and snidey comments about “miraculous recoveries” to which I’d raise an eyebrow and ask politely “is there a problem?”  Once confronted most people backed down and scuttled off.

Portable scooter which goes in the boot of the car (if you have someone to lift it in for you!)

My cousin once asked me if I was embarrassed at having to use a scooter, a question which surprised me.  For a start, without the scooter I couldn’t leave the house so to me it was absolutely fabulous.  And for another, what was it I was supposed to be ashamed about, exactly?  I hadn’t made myself sick.  Hadn’t robbed anyone.  Wasn’t a druggie or a dropout.  Hadn’t committed murder.  My body was poorly and didn’t function as well as it might – I’m still flummoxed as to where the shame is in that.  My view is that I’m lucky enough to live in a country where mobility aids are, for those who can afford them, accessible and I’m grateful for the fact.  I’m sure there are a lot of disabled people living in Africa who would kill to use a mobility scooter to get around.

Now my M.E. is at a moderate, rather than severe, level I do walk whenever I feel well enough.  I kind’ve understand where my GP was coming from and agree that, if it doesn’t make your condition worse, you should try to walk if you can.  It keeps muscles strong, heart and lungs healthy and helps control weight, alongside all the emotional and psychological benefits.  I am so grateful there are now days I can walk for 10 or 15 minutes down by the river with Bertie and I love and appreciate every second.  However, there are also days I am too exhausted, in too much pain from my Ehlers-Danlos, or simply feel too ill to walk, so still regularly use my mobility scooter and am grateful to do so.

Having EDS means I live with chronic pain and frequent injuries.  My back and hips are particularly badly affected and I have issues with my sacroiliac (SI) joint.  When I stand and walk the pressure on my SI joint, lower back and hips can be incredibly painful and there are times I need to take the pressure off the lower half of my body by using crutches.  I fucking hate my crutches.  The NHS ones were useless, heavy and hurt my arms, wrists, elbows and shoulders, so I bought some Smart Crutches which, if you have to use crutches, are as good as it gets.  But they’re still a pain in the arse.  Trying to manoeuvre steps and stairs on crutches is a mare and, if you use them around the house, they just get in the goddamn way.  What the hell do you do with your crutches when you’re making a brew, for example, or a meal.  Doing the washing up or having a pee?  They just constantly get in the road and, having leaned them against the kitchen counter while I put the kettle on, inevitably end up falling on the floor.  I should probably use my crutches more than I do but unless I’m absolutely desperate I can’t stand the hassle.  If I had the money, and my house was suitable (which it’s not) I’d much rather use an electric wheelchair on my bad days than crutches, but at the mo it’s just not an option.

I put off using mobility aids for years because of a lack of knowledge about my diseases, how to manage pain and effectively conserve energy.  I thought using disability equipment was somehow giving in when in reality I was just punishing myself unnecessarily.  These days I’m much better at knowing my energy limitations, recognizing if I’m having a particularly bad day or am injured, and altering my mobility needs to suit.  I’m grateful I have access to aids which help my daily life and would actually use more, not less, if I could afford to.

All terrain Class 3 road scooter.

Weekly roundup

Whoooooooo.  This is the sound of me exhaling, something I haven’t done for a good 2 months.  Finally I’ve been able to have a couple of days at home and actually slob about in my jim jams, well until it’s time to take the furry child out for his afternoon jollies when it’s advisable to put some clothes on – I’d be a Smorgasboard for mozzies, ticks and midges if I sauntered through the woods half naked.

Physically my Mum is coping OK, but it’s her behaviour which is astounding me.  She is no longer drunk and we are having actual conversations in which she is lucid, rational and just plain normal.  And she’s now ringing me too, which she hasn’t done for 4 years as she was too busy getting legless.  I don’t have to think about what time of day it is, because I can speak to her at 7pm at night and she’s just the same as she was at 10am.  When she was drinking she was so smashed she made no sense by evening.  On a purely selfish level it’s wonderful.

But more than that she’s really calm.  My Mum’s always been a feisty person and while she’s been drinking she’s been a mare.  She constantly got frustrated and irritated, particularly with my Dad, and was a real bully at times.  But since coming out of hospital she is weirdly chilled.  She is not snappy and constantly losing her cool, which means visiting isn’t the stressful experience it used to be.

I arranged for her GP to come and check her over and had a quiet word with her about the situation.  My fear is that now Mum is out of hospital, she is not being fussed over by the nurses, she doesn’t have the other patients to chat to, she’s not drinking and is discovering the full extend of her physical limitations and isolation that she will nose dive into severe depression.  She drank because she was unhappy and lonely and that hasn’t gone anywhere.  So the GP is coming back this week to monitor her mental health.  I’m not buying this new, zen persona for a second, though I’m enjoying it while it’s on offer.

My hormones have been rampant this week and I had a very painful ovulation.  My egg release is getting more and more excruciating, I’m assuming because of all the endo-related adhesions on my ovaries,  and for a couple of days I literally couldn’t stand up straight.  I also had a niggly migraine for 4 days which kind’ve spoiled my R&R and my emotions were up and down like a bride’s nightie – one minute tearful, the next wanting to tear someone’s head off.  S’not nice.

Wednesday night was my Camera Club and months ago I’d been roped into doing a demonstration on Photoshop.  I woke that morning with a migraine which got worse as the day progressed, but thankfully it wasn’t bad enough to stop me driving so I soldiered on.  All was fine until mid-way through the workshop when my brain suddenly felt like it had become loose and had gone crashing into the side of my skull.  I seriously thought I was having a stroke.  For a few minutes all thought processes ceased and I literally couldn’t speak, which was proper scary.  Although it settled down, for the next half an hour trying to get my thoughts and words together was tricky and my blood sugar plummeted until my hands were shaking.  These weird vertigo-like episodes are becoming more frequent and I’m not sure if it’s to do with the peri-menopause or is linked to my migraine (I’m thinking more hormones because they often happen without a headache).  I do wish they’d jog on cos they’re starting to freak me out.

Being as though I had a few hours to myself this week I was able to take some photos, which I haven’t had time for in ages.  We have a competition coming up with the theme of ‘Water’, so I decided to try and photograph ‘rain’ which involved being outside in the dark in a flimsy dress and standing under a freezing cold hosepipe when it was only 10C outside.   I won’t be doing that again in a hurry 😉


I also thought I’d try some hi-key photos with the last of the summer flowers from my garden.  These were much more pleasant to do, if a bit of a faff.


On balance it’s not been a bad week all things considered, though my mast cells are certainly on high alert from all the stress and over-exertion of the past few weeks.  I am seriously not sleeping, have nightly anxiety nightmares which leave me drenched in sweat and am getting up in the night for a pee, a sure sign my histamine is rampant.  My back and joints are also painful, which is probably a combination of my hormones, mast cells and the autumnal weather, and my appetite has gone through the roof (definitely menopause related!).  On the plus side I’m starting to feel more like a human being than road kill and at least have clean socks and undies now I’ve had chance to do some laundry 🙂

 

 

 

 

Great Expectations

I hope I make a pretty good friend and neighbour.  Because I’ve gone through so much, and can easily put myself in other people’s shoes, I’ll offer a helping hand to someone in need if it’s at all humanly possible.  I have often felt entirely alone in my struggles right from childhood and would have given my left arm for someone to help me.   I know intimately what it feels like to have no-one to turn to and to think that no-one cares, consequently I’ll drop everything and go to someone in need.  Even people I don’t like or who have shown me a complete lack of empathy in the past (I do draw the line at people who have hurt me in the past though – they can go swivel).  On the whole, though, I treat others the way I’d like to be treated.

Because I expect so much of myself, however, I have high expectations of other people.  And it’s caused me no end of disappointment.  The majority of folk, in my experience, are shit at stepping up to the plate and their self-interest comes first, second and third.

My neighbours are, on the whole, lovely people and I get on well with them.  When my Mum was in hospital the other week they said “we’re here if you need us, just ask”.  So I took them at their word and asked if they’d look after my dog one day while I visited her.  “Of course we will, just bring him round” they replied, which was such a relief because at the time my Mum was desperately ill and knowing Bertie was being well looked after was a huge weight off my mind.  A week later my Mum was still in Hospital so I asked my neighbours if they’d have Bert again, just for the afternoon so that I could visit her.  “I’m really sorry Jak, but it’s a nice day so we’re going for a drive up the lakes” came the reply.  They are pensioners, who could go for a drive up the lakes any day of the sodding week, month or year.  They could even have taken Bertie with them – he loves to be in the car and they could have stopped off for a nice walk with him.  But no.  My Mum was seriously ill in hospital, I was having the worst few weeks of my entire year, but their need for a jaunt came first.

I’ve lost count of the times in my life that people have offered help then backtracked.   I remember having a relapse a couple of years ago and was really struggling to take Bertie out for his afternoon walk.  Another neighbour rang and said “don’t worry about Bert, I’ll take him out for his afternoon walks this week” which was fabulous.   Only she wanted to go at 5pm, when she knew fine well that Bertie goes for his walk at 2.30pm.  This is so that he’s home, sorted out and fed by 4pm which is when I go to bed for my afternoon rest, every day being carefully managed around my energy limits and doubly so during a relapse.  5pm is my very worst part of the day, not to mention the fact that Bert would be totally desperate for a poop by then and it would be well past his dinner time.  If that were me, and I were offering to do a really sick friend a favour I’d just say “what do you need?” then do it.  I wouldn’t look at my schedule and wonder how I could fit their crisis in without it affecting my day in any way.   Help, it seems, is conditional on your dire need not interfering with someone else’s leisure time.

Every now and again, though, someone surprises me and while my Mum was in hospital one person was really there for me.  The lady I pay to walk Bertie in a morning said that she would have him any time, and she meant it.  Despite having 3 jobs and 2 kids she had him for four whole days for me and didn’t bat an eyelid.  I’m quite tearful at how much she helped me out, even though I’m sure it made her already hectic life harder.

It’s been said to me, many times, that I need to lower my expectations of other people but I’ve no intention of being a shit friend and neighbour just so that other people can feel less guilty about their own selfish behaviour.  I don’t need to lower my standards, other people need to raise theirs.

 

Social Media

I have a love hate relationship with Social Media.  I blog and it’s cathartic to share the details of my insignificant little life because I have no-one to share my days with in the ‘real’ world.  After 2 decades of being sick my nearest and dearest are bored to tears of the whole shebang and it feels like I’m whining if every time I’m asked how I am my reply is “exhausted” or “I’d be OK if I didn’t have [insert a symptom here]”.  So I can come on my blog and talk about my health without seeing rolling eyeballs.  I don’t even particularly care if anyone reads it, it’s just great to off-load and makes me feel better.  At least, it does til someone inevitably makes a ridiculous, challenging, bonkers or downright bitchy remark which makes me feel worse than ever – sadly, having to interact with haters is the price we pay for putting ourselves out there.  However, this is balanced with the supportive, funny, empathetic, informative messages from the majority of my readers and it’s that which makes blogging worthwhile 🙂

I am on Facebook but I’m not one of these people who have 2000 “friends” just to show how popular I am (I don’t think I even know 2000 people, let alone class them as “friends”).  The people on my FB friends list are either relatives (many of whom live in other countries) or people I interact with in the real world.  I do have a small handful of friends on my list that I’ve met online but they’re people I’ve developed a relationship with over several years and trust enough to share my actual, real life with.

I love going on FB and seeing what other people are up to.  Because I’m largely housebound I don’t physically interact with many people, so I can share in their life events without it costing me anything in terms of energy expenditure.  However this, of course, can also have it’s downside.  I watch with envy other people’s holidays in the sun, their visits to gigs and festivals, their marriages and births, and it can be painful.  But on the whole I like them enough to put that aside and be happy for them.  I’m grown up enough to realize that everyone has their issues and no matter how idyllic other people’s lives appear they’re enhanced to look better than they actually are.  No-one’s life is perfect or trouble free.

I struggle more with the pressure from FB to be a perfect human being.  Today’s offerings urge me to “be the reason someone smiles today”, the message from a (probably made up) divorcee to be a “good man or a strong woman” and the one which tells me I “can’t stop the waves but you can learn how to surf” from someone whose joints obviously don’t dislocate.  The demands to get off my couch and exercise,  the smiley people in wheelchairs successful despite their disability and the determined hamster climbing stairs way too big for it which I’m sure is trying to teach me an important moral lesson.  Then there are the photographs which are miles better than mine, the bodies which are miles leaner than mine and the houses while are miles cleaner than mine, all of which could make me feel pretty crap about myself if I were having a bad day.

And speaking of bad days I don’t want to see photos of emaciated abandoned dogs, lost and stolen pets and earthquake victims every time I turn my laptop on.  I accept these issues are important but my life is hard enough without being brought to tears before I’ve even had my breakfast and it’s not like I can do anything about the situation.

Then there is all the gubbins to wade through.  Goats on trampolines, recipes containing foods I can no longer eat, being urged to donate money to charity even though I’m skint, never-ending petitions none of which do a shite of good, religious bunkum and the inevitable ranting of my friends over something political, not to mention the adverts to buy everything from ornamental ducks to crystal Unicorns (WTF?).   It’s freakin’ exhausting and a complete waste of my valuable mental energy, not to mention the fact it makes my brain feel somehow contaminated.  Full of unwanted and unasked-for detritus.

And so my love/hate affair with Facebook continues.  If I take a break I feel more isolated than ever and if I go on there too much I can feel a bit rubbish about myself, disillusioned with the world and totally overwhelmed.

I am deliberately not on Twitter, Instagram, What’s App, Snapchat nor anything else.  I have a very full and busy life and simply wouldn’t have the time.  How on earth most working people, or anyone with children, find space in their day for all this stuff gobsmacks me and when I was really ill I was far too sick to be online for more than a few minutes each day.  These days I find being disabled incredibly time consuming because everyday things like having a shower takes three times as long as it did when I was healthy (it takes me 10 minutes just to take my TENS pads and braces off and get undressed!) and is absolutely exhausting so I then don’t have the energy to be on t’internet.  I think there is also a risk that you can forget to live your actual, real life and exist entirely in cyberspace.  A world with no smells, wildlife, fresh air or seasons and a shed load of nutters – I’d rather be lonely!

 

 

 

Weekly roundup

I’d hoped to do a proper blog post this week but I simply haven’t had time.  Inbetween visiting Mum every day in the hospital, clearing up after my birthday party, seeing to the dog, helping my Dad, shopping, cooking, washing and going to Camera Club the days have passed in a blurry, exhausted, painful, hectic haze.

However, the good news is that my Mum came home on Friday afternoon so I’m hoping that life with return to some semblance of normality.  Of course, once the adrenalin on which I’ve been running for the past several weeks has subsided I will inevitably crash, so I’m anticipating then spending a couple of weeks in bed feeling like the living dead and getting behind on my jobs all over again but that’s just the nature of the chronic illness beast.  I’m also expecting hives to appear any day and am amazed they haven’t put in an appearance before now, stress being my number one mast cell degranulating trigger.

The Hospital arranged for Mum to have a carer come in the morning to get her dressed, but they hadn’t arranged for a carer at night to get her undressed.  I did point out that if she can’t get dressed then she can’t get undressed (!) so before she was released I asked firmly that a night-time carer was put in place.  She can walk to the loo on her own with her Zimmer but then can’t pull her pants down because she’s holding on to the Zimmer so my Dad does that bit.  I asked what happens when she needs the loo on the night and my Dad is sound asleep in the next room and they apparently hadn’t thought of that!  So this morning a commode has been ordered to put next to her bed.  I honestly wonder what planet the social care team in hospital is on, because they clearly have no idea of the needs of their patients.  I think they just assume that because Mum is married my Dad will do everything, and I had to point out that he’s nearly 80, has arthritis and dementia and if they thought for two seconds that he is going to make himself ill looking after my Mum they can think again.

Before my Mum came home I made my Dad tip all the alcohol in the house down the sink.  He was reluctant and said he felt guilty doing it, which just shows the level of emotional blackmail an alcoholic has on those around them.  I, on the other hand, had no such qualms but then I’m not the one who has to live with my Mother, my poor Dad is.  I then had the unenviable task of telling my Mum that there was no vodka in the house so not to even bother asking.  I lied and said the doctors had told me that if she drinks she’ll kill herself as she’s so poorly, but then she had a go at me for discussing her drinking with the Doctors.  So I had to explain that you can’t go from drinking a lot every day to stopping suddenly because you could have a seizure, and the doctors needed to know that so that they could give her medication to help.  Due to the shame of alcoholism she wasn’t happy I’d talked about her drinking with the doctors so I just said “well if you didn’t drink I wouldn’t have to would I?”  I refuse to be made to feel guilty for her behaviour.  I’m not totally heartless, however, and realize she drinks for a reason so I’ve arranged for her own GP to come and see her on Monday and I’ll have a chat with her about the situation.  I’m hoping there may be some counselling available – my Mum definitely needs to talk to someone about her issues and should have done so years ago.

While my Mum’s been in hospital I’ve fully realized the extent of my Dad’s dementia.  He basically has to be told what to do every second of every day and you still have to check that he’s done what he was supposed to be doing.  He needs help to choose what to eat, help with phone calls and paperwork, and just general constant reassurance that he’s not alone.  He gets incredibly stressed when asked to do anything outside of his normal routine and gets himself really worked up about life in general.  And he’s only at the mild end of the dementia spectrum!  It’s a bloody awful disease and my heart goes out to him.

People around me are telling me to get more help with my parents and have no idea that the help simply isn’t available.  Yes my brothers should do more but the truth is they have no intention and would genuinely leave my parents to get on with it rather than step up to the plate.  Carers only do things like shove a meal in the microwave and help with washing and dressing.  They aren’t going to spend 2 hours re-arranging the furniture in the lounge to accommodate Mum’s zimmer frame as I did on Friday morning, or putting together the commode, perch stool and toilet frame which the hospital Occupational Therapist ordered and my Dad had to collect from a shop in town (the OT doesn’t even visit the house to do a proper assessment any more FFS).  There is no-one to do banking, open and deal with post, arrange follow-up hospital appointments, chiropody and hairdressers to come to the house, no-one to fix the intercom at the front door which has chosen this bloody week to stop working and no-one to unpack my Mum’s case from hospital and re-pack it with new stuff in case she needs to go back in.  All the things we take for granted that we do in a day until we can no longer do them.  I admit I’m so knackered I’m a bit grumpy and people’s suggestions of getting more help (like I haven’t fucking thought of that!) are getting on my frazzled nerves.

To be a bit selfish for a minute, I think everyone forgets that I am also ill and while I’m looking after my Mum and Dad there is no-one looking after me (mind you, the fact that no-one looks after me has been ignored for the last 23 years so no change there then).  I made sure yesterday that my folks had everything they needed, that their dinner was made, that Mum had a clean nightie to put on……..and came home, exhausted, at 6pm to find my bed wasn’t made, I had no dinner organized, my dishwasher was full and there were dirty dishes all over the kitchen counters from not only this morning but yesterday and the day before, my bin needed to be put out and I realized I hadn’t washed my hair since last Saturday (thank God for my wig!).  These are one of the few times that I miss having a partner.  Mind you, from the last few boyfriends I’ve had I would still have come home to an unmade bed, no dinner and a dirty kitchen because they were lazy bastards who did fuck all in the house, and the things they did do they expected a sodding medal for, so maybe I’m not missing much after all!

I’m sure things will settle down in the next week or so but just at the mo life feels a bit overwhelming.  I could do with an afternoon at the Spa or an evening out amongst normal people but don’t have the money, time or energy for either!  Maybe next month.

 

 

 

 

Life at Fifty

Fifty.  It’s a bit of a milestone really and it’s weird to get my head around the fact that I probably have less life ahead of me than I have behind me.

So much has happened to me in my life that I feel like a totally different person at 50 to the me I was at 20.  At 20 I was still suffering from depression caused by my chaotic childhood and years of bullying.  My self-esteem was at an all-time low.  I had no trust in my own thoughts and feelings.  My emotions were raw and volatile and I used anger to express them as that’s what I’d been taught.  My relationships weren’t healthy.  I felt uncomfortable in my own skin.  I didn’t know who I was or what I wanted from life.  Looking back now I’m just really grateful I didn’t make any long-term, life altering decisions when I was 20 like having a baby or getting a tattoo, turning to drugs to relieve the pain or ending up on the dole.  And I think the reason for that is that buried deep inside, despite everything, was always a glimmer of self-belief.  A belief that I deserved to be happy.  That I deserved kindness.  That if my life ended up a car crash it damned well wasn’t going to be because I hit Self Destruct.  So I got some therapy, I kicked my abusive husband to the kerb, rented out my house, packed in my job and took off to see the world, working on a cruise liner for a year.

It turned out to be bitter-sweet, because that Ship is where I got the virus which lead to me developing M.E., but I’m still glad I went because it made me more appreciative of what I had at home.  My friends from childhood.  My parents.  My lovely house.  And a new-found joy in the beautiful area where I live which I think is one of the loveliest on earth.  I also met a new person who was to be my best friend for the next 20 years though we’re sadly no longer in touch.

My M.E. really took hold after I contracted Meningitis while on holiday in Africa when I was 26 and it’s changed my life in every way possible.  I’m a bubbly person, full of energy and had always been on the go, and now I was forced to lie in bed 23 hours a day for years on end feeling so ill death would have been welcomed.   It gave me a LOT of time to think.  And grow.  And changed my perspective forever.

I’m not grateful I got M.E. – it’s the worst thing to ever happen to me, but I’ll take from it what I can.  My self-belief got even stronger – it had to, because just about everyone else believed I wasn’t physically sick at all and that M.E. was some kind of depression.  My resourcefulness was tested as I lived alone, was almost totally bedridden yet was offered no help or care.  My determination was strengthened as I was denied welfare benefits, my health insurance tried not to pay out and I had to take in lodgers for years to make ends meet.  I had to find a way of dealing with my anger at being left without health-care and at my friends and family just leaving me to get on with it (parents aside).  I had to find peace in my solitude and loneliness or I would have gone off-the-wall-nuts.  I had to find joy in little things.  I had to set new, vastly reduced, goals and challenges.  I grieved for my old life.  I discovered a new life, which wasn’t the life I wanted but in which I had to find happiness or I might as well be dead.

But most of all I had to learn to love myself.  And I know that’s a term which is bandied about by happy clappy hippy arseholes these days, but I truly mean it.  I had to learn to look after myself.  To care about what I ate.  To find motivation to do my pacing schedule.  To seek out new friends, even if at the time that was only online.  To find new hobbies I could manage.  I had to find ways of dealing with my grief, anger, loneliness and isolation because if I hadn’t the illness would have won.  And the fucker wasn’t going to beat me.  Hell to-the-no!  It became obvious early on that other people weren’t going to take care of me, so I had to like myself enough for me to take care of me.

“Treat yourself as your own beloved child”  Pema Chodron

It’s funny isn’t it?  Here I am at 50, single, childless, career-less and fairly skint.  My hair has fallen out, I’ve already lost a tooth, I have a spare tire, cellulite, ‘laughter lines’, failing eyesight and an ever expanding waist-line.  Yet I am happier, more thankful, more peaceful and more joyful than I was at 20 when I was a skinny model, was head-hunted at work, had a professional footballer boyfriend and all the outward trappings of a ‘successful’ life.

If I could tell my 20 year old self what I have learned it would be:

  • Live life with intention.  Stop going through the motions and hoping life will be better tomorrow – you will never get today back.
  • Only you can make you happy and only you can make you unhappy.  Other people can help, but ultimately happiness comes from within.
  • No-one is perfect.  Mistakes are how we grow and our bad points just make us rounded human beings.  However, knowing this is not an excuse to inflict our bad points on other people.
  • The world does not revolve around you.
  • Be aware of the effects your deeds, and more importantly words, have on others.
  • Live each day to its fullest and with appreciation, even if that means lying in bed ill but appreciating that you’re not homeless on the kerbside in India.
  • Don’t stay in unfulfilling relationships.  Trust me, I have never been more lonely than when I was in an unhappy marriage.  Yes leaving was tough, frightening, stressful and ultimately I ended up broke but none of that was worse than spending another day with my ex.
  • How you look is irrelevant.  Confidence and happiness, not physical appearance, makes someone attractive.  God, I wish I’d realized this when I was younger!  Angelina Jolie is supposedly one of the most beautiful women on the planet, yet she is such a miserable cow I wouldn’t want to have a coffee with her let alone marry her.  Tubby, little Dawn French on the other hand is someone I’d love to go on holiday with…..for a month 😉
  • Say “no” more.  People won’t like you more for saying yes all the time, they’ll just take advantage and you’ll just end up exhausted and resentful.
  • Don’t hold on to anger.  It’s like swallowing poison and expecting the other person to die.  I’m not huge on forgiveness and once someone has hurt me we’re basically done forever, but I don’t hold a grudge.  Grudges hurt you, not the other person.  Being angry about your illness or your situation only makes you miserable and being sick is crap enough without that.
  • Behaviour is a choice and you can change your behavior any time you choose.  Your past is not an excuse to be a dick or a doormat.
  • Find something which brings you joy.  There will be days when you’re so poorly this is impossible, but the rest of the time I try to do something every day that I enjoy even if it’s just having a bath by candlelight.
  • Be kind, both to yourself and others.  I appreciate kindness more than any other quality in a human being and when someone is kind to me it makes me feel good.
  • Don’t put up with other people’s bullshit. I’m not prepared to make myself feel small or stupid so that other people can feel superior.
  • There will always be people who know more, are prettier, more altruistic, cleverer, richer etc. than you.  This does not make them better, just different.  We are all equal and unique.
  • Try not to be so judgemental.  You hate it when others judge you.
  • If you don’t have something nice to say, say nothing.
  • You are too serious.  Fuck the washing up and the laundry and have more fun for crying out loud! 😀

Of course, my 20 year old self wouldn’t have listened.  For most of us it takes years to grow into ourselves, to find out what makes us happy, to gain self-confidence and self-belief and to ultimately feel happy in our own skin.  And when we get there to recognize that we’ve got there and be grateful.  I wonder what my 100 year old self will say to my 50 year old self?  Probably that you have a lot to learn 😉