Tag Archives: living with chronic illness

Weekly roundup

This week was the first of my stay-cation but I’ve been so busy I think I’m going to need another holiday to get over my holiday 😉  Back pain aside, however, it’s been a fabulous few days and I’ve enjoyed every second.

On Monday a friend and I went to photograph wild Red Squirrels.   They are native to Britain but in the late 1800s North American Grey Squirrels were let loose in the UK (for reasons unknown) and over the years they have decimated the native Red Squirrel population, not least because greys carry squirrel pox to which they are immune but the reds are not.  We have one of the few remaining red populations here in Cumbria but they are very timid and shy animals and very difficult to capture on film.  But I managed it and had an enchanting hour sat by a tiny waterfall in woodland watching 3 reds foraging for food:

Thursday I had a lovely day with my best mate, having lunch out to celebrate her birthday.  I had taken a shot of a local stone circle and, having seen that on my Facebook page, my friend had asked for it to be printed off for her birthday.  I’m a shit landscape photographer so was extremely flattered that she’d liked it enough to put it on her wall.  I went the extra mile and had a custom frame made and even I admit it turned out nice.

Thursday night didn’t quite go to plan as I discussed in my last blog post, however I still made it out on Friday night to my Camera Club’s annual awards dinner.  Food was fab, company was great and I walked off with 3 trophies for winning the Summer Challenge, the Intermediate Print League and the Intermediate Digital Image League – there was much ribbing about me needing a wheelbarrow to take my haul home and an extension built on my house to put them in 😉  As a bit of fun we had to produce an image we’d taken with a caption and I also won the caption competition:

Saturday I had booked to go on a short Portrait photography workshop.  It was a stupid thing to do considering I’d been out the night before and knew I’d be absolutely knackered but there was a reason to the madness – I needed a distraction from the fact that 300 miles away 6 judges were looking at a panel of 10 of my photographs and assessing me for my first photographic distinction!  So off I toddled to the workshop along with 5 other people from my camera club.  I have to admit it wasn’t that great and made worse by being so tired and still having awful back pain, but having said all that it was interesting to be in a proper photography studio with expensive lights and stuff.  I managed to get a nice image of the model too, though it still needs some work:

After the workshop finished I tentatively checked my phone and saw I’d received a text from someone I know who was at the Distinction Panel – I held my breath as I opened it.  Hurrahhh I had passed and can now put the letters CPAGB after my name! 🙂

So, as weeks go this has been one of my best in a long time.  I’ve way over-done it and will suffer the consequences over the coming days but I don’t care!  I’ve spent time with fabulous people doing the things I love and life doesn’t get much better than that.

Bitterness

Being chronically ill isn’t how it’s portrayed on the telly.  On the tv people get sick, lie on the couch looking fabulous (if a bit pale and wan) while their friends and family rally round bringing blankets and chicken soup, enabling them to make a complete recovery usually with the help of some miraculous new medical intervention.  There is no unwashed hair, food stained pyjamas, stench of Deep Heat, denial of their symptoms by the medical profession and their nearest and dearest don’t bugger off into the sunset to carry on their lives without them.

For me, and many of my severe and long-term ill friends, life can be a lonely, isolated, frustrating and boring existence.  Friends who kept in touch in the first couple of years have long since drifted away.  The tension of still being reliant on parents when you’re in your thirties or even forties, or having a spouse turn into a caregiver, tests even the most rock-solid of relationships.  Children grow up with a basically absentee parent.  Careers we fought so hard for vanish forever.  Finances are tight.  Holidays by the beach are a long forgotten memory as we live our lives imprisoned by the four walls of our home, each day stretching before us in pain-filled, monotonous solitude.

There is much grief in living with chronic illness.  The mourning of a life we thought would be ours.  The letting go of cherished hopes and dreams.  The realization that this is now our future and all hope of normality is gone.

I’d already had a tough child-hood.  I’d already survived years of bullying, an abusive husband and being ostracized by my paternal family.  I had just started to gain my emotional equilibrium and find happiness when M.E. hit.  It felt desperately unfair.

I clung on to the hope that I’d be better in a year or two, but as I reached the 5 year mark, then the 10 year mark, hope left the building.  15 years down the line I’d gained my EDS diagnosis.  20 years down the line and MCAD, Endometriosis, Adenomyosis and an Essential Tremor had been added to the mix.

I’m not sure whether time makes it easier, or harder, to fight off bitterness.  There are many days I wake with joy in my heart and gratitude for my life, but still those days I wake feeling angry and hard done by.  Having been given all these issues to deal with couldn’t the Universe have provided me with a little compensation?  A loving husband, my dream home, or a lottery win maybe?  Something, anything, to make up for all I’ve lost?

There are days I struggle to fight my anger. My experience has given me hard edges and made me emotionally difficult to reach.  Yes it’s provided me with other attributes – empathy and a kind heart I hope – but it’s taken far more than it’s given.

I try not to be hard on myself on those days bitterness engulfs me.  I tell myself it’s normal to feel that way now and again, just so long as it’s not all I feel.  There are no Manuals to tell us how to live a joyful and fulfilled life when so much has been taken away.  I remind myself there are people far worse off than me in the world.  That I do, in fact, have much to be thankful for.  Some days that helps.  And other days it doesn’t.

I don’t want this post to sound maudlin or depressing – I’m just being honest about the reality of living a restricted life.  We’re not Saints, we’re just human beings doing the best we can under exceptional circumstances.  It’s normal to feel frustrated, angry and bitter – the hard part is to not let that consume us.

Weekly roundup

I do not have pretty legs.  Along with the ‘elephant knuckles’ on my hands I seem to have ‘elephant knees’, and in addition I’m bow legged due to my flat feet and consequently rolling ankles.  It’s my Camera Club’s annual dinner and awards presentation this Friday and one thing’s for sure, I won’t be wearing a skirt which is a shame because, although I’m not the most girlie girl in the world, I am female and it would be nice now and again to wear something pretty.  The situation has not been helped by all the bruises I managed to acquire while helping my neighbour last week.  I’ve no clue how I got them, they just appeared, but they sure aint ladylike!  Is it just me who thinks the bruises on my right knee have made a face?  And the ‘face’ on my left knee looks like it’s winking LOL!

For about 5 days this week I had bags of energy.  At the time I had no idea why but was grateful and made the most of it 🙂  I got all sorts done, then woke up Tuesday morning to discover my period had arrived.  I was only on day 19 so it was completely unexpected, bearing in mind my cycle last month was 32 days.  Due to my endometriosis I usually have plenty of warning when my period is on the way in the form of back and stomach pain, but this month nada.  I can’t believe some women go through their whole lives like that, just having periods and it’s no big deal.  I’ve never had a pain-less period in my entire life and it was wonderful but weird!  I’m now putting my preceding energy spurt down to hugely surging hormones.

The few days since my period has ended have not been as great.  I appear to be having post-period tension and am like a weepy bear with a sore head.  My dwindling hormones also give rise to spotting for days on end and my back and reflux are rubbish.  My proprioception is also way off and I’ve spent three days banging into the furniture, dropping every item I pick up and spilling everything from my morning cuppa to the liquid which goes in my washing machine draw.  It’s driving me nuts!

To add insult to injury my cold-induced cough is still lingering.  Three weeks of hacking up phlegm when you’re already ill is pants and I just wish it would do one.

Wednesday was my last Camera Club of the season and we won’t meet again until September.  I’ll really miss it.  It’s the only time I ever get to see people and I enjoy being sociable as much as I enjoy the photography.  However, at the same time I do find the 2 hours I spend there exhausting.  Thursdays are always a right-off and I’m still suffering the consequences on Friday.  Bertie will be happy though.  He’s usually fed at 4.30pm then sleeps til 6am the next morning – having to go out in the cold at 6pm to be dropped off at his Nannie and Granda’s and not getting back home til 10pm makes him tired and grumpy 😉

I started a 2 week stay-cation on Friday.  As regular readers will know, I decided that I deserve holidays just like everyone else and although I can’t afford, and am not well enough, to go away that doesn’t mean I can’t abandon my parents and my home for a fortnight three times a year.  I’ve made sure my Mum and Dad don’t need anything doing, I’ve cooked and frozen enough meals to see me through and caught up with my laundry.  Apart from still having to take Bertie out, I’m spending my days doing what I want and not thinking about anyone else for a change.  Bliss 🙂

Today is Easter Sunday.  Like most heathens the religious significance passes me by, but I am going out with my parents for lunch which I’m both looking forward to (getting out of the house and not having to cook) and dreading (Dad being scatty and Mum being drunk).  Whatever you’re all up to I hope you have a lovely day 🙂

Save the one who’s quiet

In a previous job many moons ago I was the designated fire officer.  As such I was trained to pull a body from a smoke filled building and to give first aid.   On my course I was told that when you come across the scene of an accident you ignore the people who are shouting because they are clearly still alive and find the people who are quiet because they are the ones most likely to be seriously hurt, unconscious or to have stopped breathing.

During my time in the ‘chronic illness world’, particularly online, I have met two groups of people: those who constantly ask for help, advice, love and support and those that don’t.  And it’s those who ask for support that often need it the least.  The friend I fell out with a couple of years ago had parents who had been together for 50 years, a loving, caring, supportive husband of over 20 years, private health care, a beautiful home overlooking the sea, lots of online friends………..yet virtually every post was asking for love, prayers and positive thoughts because she was having yet another crisis or hard time.  On the other side of the coin I have a friend who has been single her whole life, is horrendously ill, can barely leave her bed let alone the house, can’t have pets or friends to visit as she is too poorly to cope with them, must be soul-destroyingly lonely, frustrated and unfulfilled……..yet never complains.  She comes across as cheerful, positive, caring, kind and thoughtful but I worry about her far more than I worried about my other friend.  Yet it was the other friend who got all the support on Facebook, cards and flowers sent through the post, thoughtful gifts on her birthday and Christmas and my very sick, isolated friend is just left to get on with it.

When you meet me, I come across as bubbly, energetic, enthusiastic and hopefully kind and helpful.  I have a strong work ethic and will tackle jobs which actually make me sick or cause me huge pain because I refuse to give in to my diseases.  I will do things to help others, even if it means I end up in bed or braces (which they don’t see because I don’t tell them – I don’t want them to feel bad that helping them has made me worse).  I have been accused of exaggerating my illnesses because I can ‘do stuff’ or because I don’t dwell on the consequences of ‘doing stuff’ so no-one knows how ‘doing stuff’ affects me.  I sometimes wonder if I’d’ve received more help, understanding and support if I’d been more verbal about my limitations.  If I’d constantly gone online saying how lonely I was, or how isolated.  If I’d shown the world how depressed I’ve been at times over the last twenty years.  How I mourn not having a husband to share my life with.  How I’d love to go on holiday to somewhere sunny.  How I worry about finances and how I struggle to afford joint supports, orthotics, supplements and special clothing.  How I’ve sat in a heap on the kitchen floor crying due to the exhaustion and pain of cooking my dinner.  And the 1001 other issues I’ve faced.   But it’s not in my nature to whine.  I’m not comfortable asking for help and on the odd occasion I have asked for help it’s been less than unconditional so I haven’t asked again.  I’ve been around people who are negative and constantly ask for reassurance, help, guidance, advice, love, prayers and support and it’s bloody exhausting…….I don’t want to be a huge black hole of need, sucking the life out of others just so I can feel better.

But it is often those who don’t ask for help who need it most.  It’s not the person shouting “I’m going to top myself” who actually commits suicide, it’s those that pretend everything is fine and paint a smile on who ultimately take their own lives, then everyone is shocked because “they always seemed fine”.

So I make a concerted effort to ask my friends who seem like they have it together if they’re OK and I don’t take the first “yes, I’m fine” answer as the truth.  I dig a bit, and often when I dig a bit they admit that maybe things aren’t so fine after all.  It’s hard to ignore the friends who shout because, well, they’re SHOUTING and it’s easy to not contact the quiet ones for 6 months because they’re just getting on with it but it’s the people who don’t ask for help that often need it the most.

“Nobody heard him, the dead man,
But still he lay moaning:
I was much further out than you thought
And not waving but drowning.

Poor chap, he always loved larking
And now he’s dead
It must have been too cold for him his heart gave way,
They said.

Oh, no no no, it was too cold always
(Still the dead one lay moaning)
I was much too far out all my life
And not waving but drowning.”

Stevie Smith

 

 

Weekly roundup

I really must make more lists.  As I’m going about my week I think to myself “I’ll tell my readers this on Sunday” but when Sunday comes I can barely remember what I did an hour ago let alone on Tuesday 😉

I do know that I spent the whole of Monday in bed with a migraine due to my attendance at the Photography Salon last weekend.  It was to be expected but still sucked.

The good news is I am feeling so much better since starting the Spatone iron water for my low ferritin and making a concerted effort to include iron-rich veggie foods at every meal and snack.  When I first tried the Spatone it gave me awful nausea, stomach pains and a bit of a runny bum (iron supplements are notorious for giving people gippy stomachs), so I took a break then restarted it a little bit at a time, working up to a full sachet.  I now have no side effects and the daily dizziness I’ve had for months has totally gone 🙂

After 16 days my cold is still lingering.  I’m not alone – a friend at Camera Club also has the bug and has been coughing and sniffling even longer than me.  I woke this morning and my runny nose finally seems to have dried up, only to be replaced by the raging sore throat which started the whole debacle.  WTF?!  I take Sambucol daily (which contains both Vitamin C and concentrated elderberries which are high in mast cell stabilizing quercetin), with added vitamin C in my Spatone, yet the bioflavanoid doesn’t seem to be helping my immune system fight the good fight.  On the plus side my hive outbreak, brought on by my mast cells having a virus-induced hissy fit, has finally cleared up though I did have to use steroid cream on my butt for a week.  For anyone who wants to know the technical ways in which mast cells react to viruses see Lisa’s article here.

I was given a garden centre voucher as a “thank you” when I left my volunteer job as compositor for our Church newsletter recently, so on Tuesday my bezzie and I had lunch out and a potter round a Nursery.  I bought 11 plants which, with my voucher, only cost me £8 🙂  I now have to find the energy from somewhere to actually put them in my garden!  I love gardening but plants are now so expensive I can hardly ever afford to buy any and actually doing any gardening cripples me :-/

I finally exploded over the situation with my 90 year old next door neighbour this week.  She fractured her hip last year and now has great difficulty walking let alone doing anything else.  She has two children who are about as much use as a chocolate fireguard.  My neighbour agreed to home care, but they were terrible – often turning up an hour late and sending someone different every week so that no-one ever knew what needed doing.  It rightly drove my neighbour nuts so she cancelled them.  Her house isn’t just filthy, it’s squalid.  She only has a bath 4 or 5 times a year.  She has a skin condition, which means she has weeping, pussy, bleeding blisters constantly.  She wears blood soiled clothes and sleeps in a blood soiled bed which again only gets changed 4 or 5 times a year.  Her kitchen is so dirty you can hear your feet sticking to the floor when you walk in there.  No-one seems to be helping her and it makes me furious.  It’s now so bad I feel physically sick when I visit as her house is so disgusting.  So on Wednesday, when I was paying my cleaner £10 an hour to clean my house, I went over to my neighbours and cleaned her oven. Four hours and a lot of elbow grease later it’s still only 50% clean but at least it’s something. Her hob is now spotless, but sitting on it is the most disgusting pan and casserole dish you’ve ever seen.  They’re beyond cleaning, so I’m buying her some new ones this week even though I can barely afford it.  She can no longer reach her wall units, so there is food and crockery all over the counter tops which makes cleaning those impossible.  Why aren’t her children sorting all this out?!!  She also has a huge apple tree in her garden, and all the apples have fallen off onto the lawn where they have lain rotting for months.  So for the past two days I’ve been picking up apples and have so far filled 5 dustbin bags which I’ll have to take to the tip.  Her only crime is being old and sick and unable to care for herself.  The District Nurses know about her, Social Services know about her yet she is still left in filth – it’s inhumane.

Yesterday I aged 5 years. I was helping the neighbour mentioned above walk to a seat in her back garden, looked round and Bertie (who had been right next to me) was nowhere to be found.  He has a tendency to wander up the village, so I thought he’d be on the verge at the front of the house. Nope. I called him. Nothing. I then spent 20 minutes running up and down the village like a loony toons shouting his name and couldn’t find him.  I always fear that, being a cute Pedigree, if he’s loose in the village someone going past in a car will snatch him. I was crying and terrified.  I was too exhausted to walk another step, so decided to get my neighbour back into her house so that I could get on my scooter and search further afield. I opened the back door, and there was the Bertster in her kitchen – he had pulled over the waste bin and was busily trying to eat the rubbish. I didn’t know whether to kill him or cuddle him! I have no idea how he got in the house as the back door was shut and why did the stupid git not bark when I was shouting for him if he couldn’t get back out?!

I’m now off to spray my throat with Ultrachloraseptic and am wondering if it’s OK to eat ice cream for breakfast!

 

I am not my disease(es)

I have occasionally been accused by some people who read my blog that I don’t know my stuff.  That I don’t research enough, or read enough, or belong to enough online groups or keep up to date with the latest goings on.  And to a point they’re right.

I have a life y’see.  Outside of my diseases.  I actually like to talk to people in the ‘real world’.  I love being outdoors, watching the local wildlife through my long camera lens.  I spend time in the bath reading Photography magazines.  I waste hours tinkering in my miniscule garden.  There is nothing nicer on a warm day than walking Bertie down by the river and trying to sneak up on the Heron to capture him on film (I haven’t managed it in 3 years but I’m always hopeful 😉 ).  My guilty pleasure is watching Teen Mom on the telly and I’m currently addicted to Broadchurch.  Sometimes I simply lie in my bed and do absolutely bugger all but listen to the birds singing outside and the sound of my dog snoring contentedly beside me………. and it’s heavenly.

I don’t belong to Twitter or Instagram, Snapchat or WhatsApp and I only have 80 Facebook friends (I consider a ‘friend’ to be someone I actually know, not some random stranger I met online last week).  I’m not on any groups or forums.  I don’t have time.  I’m too busy having fun and trying to remain a fully rounded human being despite my physical and mental limitations.  I’m too engrossed smelling the early spring flowers, watching the clouds drift by in the sky and cherishing the sound of the returning Swifts and Lapwings.  In other words, belonging to the real world.

I know I’m lucky to be well enough to enjoy life outside the house, but even during the 10 years I was bedridden I didn’t spend every waking second in cyber space.  I was too busy then trying to get better – resting, meditating, soaking in epsom salt baths and juicing home-sprouted pea shoots.  And it worked (thank you God), at least to a point.

Yes there are people online much more informed than me, who are surgically connected to their computers and available 24/7 (when do these people sleep?!).  They know everything about everything yet are, amazingly, still sick, just like me.  But less happy and content I’d wager.  It can be really stressful being online, and the reason I left all the forums and groups was that some people are just argumentative, negative, rude pillocks and they used to wind me up to bursting point which wasn’t good for my health.  Personally, I would find spending hours a day reading complex research papers boring as all hell and I have no intention of wasting the little mental energy and clarity I have doing that – if and when a cause for M.E., or the gene for hEDS, or the cure for MCAD is found it’ll be splashed all over the news so I won’t have to belong to 20 different Facebook groups to hear about it.

I am more, oh so much more, than my diseases.  I don’t need to know how my genes express themselves (I just know they seem to be angry at me 😉 ), or the fact there have been 5 different studies since Christmas which claim to have found the cause of M.E. (they can’t all be right and I’d bet my life none of them are!), or how physiotherapy is the be all and end all of EDS management (“bollocks” is all I have to say to that).  So I cherry-pick the information I feel is most relevant to me and the forums which are most useful to dip into with specific questions and ignore everything else.  The balance of knowing enough about my diseases to manage them (there is no magic cure or even effective treatments) and inform medical staff about them, yet not so much that they rule my every waking moment works for me, and means that my life is lived in tandem with my illnesses, not consumed by them.

Weekend roundup

And what a weekend it’s been.  I’m exhausted but with a huge sense of achievement, so that’s OK then 🙂

Sat and Sun I attended my first International Photography Salon.  Once a year it’s held in Cumbria and our Camera Club are amongst the hosts, so I was one of the volunteers who helped run the event.  I had to be up at 6am both mornings, dressed, fed and take Bertie to my parents for 7.30am.  I was then collected by some friends in their car and we travelled for an hour to the venue.  By the time we arrived I was knackered and it wasn’t even 9am 😉  The day then finished at 5pm, we travelled the hour home, I had to collect Bertie, drive another 20 minutes back to my house, then start making my dinner.  Needless to say I ate it half propped up in bed as I was so shattered by that stage, and in so much pain, I couldn’t even sit upright!

My job both days involved being on the computer, checking the image being judged matched that shown on screen.  Trust me when I say 6 hours of that each day was mind boggling!  Thankfully I had my wing-man John to help out – I tended to the do the morning shift when I am at my most mentally alert and he did the late afternoon shift when I am usually in bed because I have conked!

The weekend was made even harder by the fact I am still not over my cold.  Ten days now of a runny hose, hacking cough and sore throat, on top of which having a virus has caused my mast cells to ramp up a gear or three and I have a large outbreak of hives on my backside.  Lovely.  However, I coped really well all things considered and am actually rather proud of myself 🙂

As I was only in the admin team and not actually judging, I was allowed to enter some images of my own into the Salon.  I didn’t hold out any hope, as this was my first International Exhibition and there were 15,000 images judged from all over the world.  *However*, I was delighted to discover yesterday that 3 of my images were accepted into the Exhibition and not only that but the image below received an Honourable Mention in the Open Monochrome (ie black & white) section.  OM-flippin-G!!!

An Honourable Mention means that the image scored maximum points but wasn’t selected for a medal.  Still chuffed to bits that this image made the final 20 out of 1,400 images but, and the chap in the photo who is our village grass cutter, will be tickled pink 🙂

I don’t have any results from today, though am not expecting to get anywhere with my colour images.  Mind you, I didn’t expect to get anywhere with my Black & White image either so who knows lol!

Needless to say it will probably now take me several days of bedrest to get over my humongous weekend, but I’m still glad I was able to do it.  I’m sure at events like this where I appear absolutely and utterly ‘normal’ my Camera Club mates must think I exaggerate my illnesses.  Of course, they didn’t see the TENS machine on my back, the brace on my leg, the acupressure sickness bands on my wrists, my neck wrap or my support stockings as they were all hidden under my clothes.  They weren’t with me for my slight mast cell reaction after breakfast today or in the early hours when I couldn’t sleep for hip and back pain.  They were also unaware of the several times over the weekend I felt like I was going to faint, or puke, or both and the fact that at one stage both my arms went completely numb.  And in some ways I’m glad they’re not aware, because that means for just a few hours I can live like a ‘normal’ person and do things a ‘normal’ person does.  I wish, however, that my ‘normal’ friends could endure the payback for me this week because I know it’s going to SUCK!