Tag Archives: chronic illness

Friendships

Today I read another wonderful post by Lindsay over at Musings of a Dysautonomiac, a fellow blogger who has POTS and MCAS.   I ‘met’ Linds through my blog and am now privileged to class her as a friend, not in any kind of traditional way because we live in different countries and are online at opposite ends of the day, but in my heart.  I look forward to her posts and Facebook messages, rally for her and struggle with her – all without saying a word because I don’t have the energy but I hope she knows that I see her and care about her life.

It’s a good job I make new friends every now and again because I’ve lost all my pre-illness mates.  Every single one of them.  Sometimes I’ve let the relationship go and sometimes they have but the end result is the same, and no matter who the instigator is saying goodbye to a relationship you once held dear is painful.

Like Lindsay, I traditionally got along with men better than women.  Having said that, I always had one or two very close girl friends but they were often people who were in some way broken or needy and, being a caring person, I often seemed to fall into the parental role in my friendships which of course turned to crap when I got ill because I could barely take care of myself let alone anyone else.   I’m also not a girlie girl and just find the banter and straight-talking attitude of blokes easier to handle than the complex subtleties of women which I often find bewildering.  But then I got sick and realized that, on the whole, men don’t do illness.  They make rubbish carers and simply don’t know how to react around sick people, especially a sick person who used to be feisty and independent and who is now…………well, still feisty but more needy 😉

After all these years I’m not even sure it’s possible for me to have good friendships with healthy people.  They just don’t get it.  Have no clue what my life is like or the struggles I face every day.  And I’ve found I lose patience with their whining over inconsequential shite and am frustrated by how little they value their lives – their healthy, active, vibrant, full of possibilities, lives.  And don’t get me started on how much they moan when they have a cold!

Occasionally, though, healthy people surprise me and there are two or three people at my Camera Club who do make an effort to ask the question “how can I make it easier for you to do x, y or z” and to include me in activities, for which I am hugely grateful.  It’s a lot of pressure though.  Here they are making special efforts to arrange outings and activities which I can take part in, but then I feel like I absolutely must take part because of all the trouble they’ve gone to.  So what happens if, on the day, I wake with a migraine and can’t move, or have anaphylaxis and end up in bed puking?  I let everyone down and although they try not be annoyed I know they are because, after all, they’ve gone to all that trouble just for me and the least I can do is show up.

Having close friendships with other sick people, however, is also challenging.  Neither of you has any energy and trying to find a day to meet up when you’re both well enough can be a struggle.  It’s vitally important you don’t just have illness in common too, otherwise all you do when you get together is talk about being sick which would be monumentally depressing.  I met my now best mate at an M.E. conference about 15 years ago and neither of us are particularly girlie girls.  We’re both creative and practical, like nature, gardening, being outdoors and have renovated houses, so have stuff besides our shared disease in common though I’ll never understand her passion for mines 😉  I honestly think I’d lose my mind if I didn’t have her in my life – no pressure then K!

Friendships when you’re chronically ill are tricky.  I’d love more friends but realistically know I don’t have the energy, especially if the friend is well and expects to meet up regularly or do physical activities.   Friendships with other sick people are easier in some ways yet harder in others – when you both lack energy there is a tendency to not communicate for months on end which, while understandable, is lonely.  And while online friendships are great there’s no substitute for meeting up in real life and actually being with another person.

If you’re lucky enough to find someone you click with, who shares your sense of humour, your interests and who gets you and your disease it’s priceless.  I’ve told my best mate that, should she ever threaten to break up with me, I am chaining her up in my shed so’s she can’t escape 😀  To all my online friends, whose caring, sharing, humour and empathy keep me going every day of my life “THANK YOU!” for being there and for being you.  You make an otherwise unbearable life less lonely.

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Disease Denial

I’d guess that 100% of us are in some form of denial when we’re first diagnosed with a chronic illness.  Obviously we know we’re sick and for me personally all three of my diagnoses were a huge relief because finally I could put a name to my symptoms and stick my tongue out at all the doctors who’d told me there was nothing physically wrong, but there was still a massive amount of rejection of the fact that I would never get better and my life had changed forever.

When we’re first diagnosed we go online and read about all the success stories.  People who’ve had dry needling and physio and have gone from needing a body cast and a wheelchair to running the London Marathon and we think ‘yep, that’ll be me’.  Only it usually isn’t, especially for those of us who are diagnosed with hEDS in our middle or later years and who have already had decades of untreated trauma to our joints and ligaments.

In the case of M.E. the denial can be particularly strong.  The internet is full of people who have been ‘cured’ and we don’t twig that they never had M.E. in the first place because it’s a disease with no test and widespread symptoms which can be mistaken for scores of other illnesses.  Even my Doctors told me I’d soon be better because “most people make a full recovery within two years” which is probably the biggest fib I’ve ever been told.

I went online in the early years of M.E. and read about people recovering after ice baths, gluten-free diets, hyperbaric oxygen, bee propollis, lymphatic drainage, Ampligen and 2000 other treatments and thought “right, I’ll try every single one cos I’m 26 years old and I need my goddamn life back”.  So my parents spent in excess of £20,000 on everything from reflexology to experimental electrical stimulation and it made not one iota of difference.

People with M.E. can, and occasionally do, improve but from my years of experience of the disease I’ve never come across anyone yet who’s made a sustained improvement because of some weird or wacky pill or therapy.  Nope, it’s been the same thing in 99% of cases and a recent story on the ME Association’s facebook page proves the point.  For most people, any kind of recovery includes the following:

  • Rest
  • Good balanced diet, with plenty of antioxidents
  • Avoiding stress
  • Drugs to help with sleep and pain
  • Pacing
  • Gradually increasing activities over a number of years (sadly not days or months).

It’s that simple, yet so incredibly difficult hardly anyone achieves it and sometimes despite doing all the right things no improvement is seen.  I especially wonder if it’s even remotely possible to achieve improvement if you have kids because there’s no way on earth of having a stable routine every day, or getting the rest and sleep you need, when you have a family.  And it’s absolutely not do-able if you continue to work.  That’s hard to hear isn’t it?  And even harder to accept.

I know people with M.E. who have been ill for two decades yet are still in denial.  They’re stuck in the grief and pity stage and haven’t moved on to the acceptance stage.  They’re constantly online expressing amazement that their symptoms wax and wane or are worse after activity yet still won’t change their lifestyles to allow their symptoms to stabilize.  Asking their friends to pray for them or send them positive vibes, frantically still trying to find peace.  It makes me so sad.

I can tell my friends who’ve reached acceptance because they rarely mention their disease(s).  They talk about their pets, or books, or telly programmes, or how shit their Carers are, or the wildlife they see from their windows and there is nothing about their pain, physical or emotional.

I was listening to an Australian radio interview given by Jen Brea and her husband last week and she made a very potent point.  That it’s a fine line to tread between acceptance of your situation, living in the moment and finding joy and peace, yet never giving up hope that science will catch up and find a cure or effective treatments.  I think people who are in denial might feel that if they accept their situation it means giving in and giving up, when of course it means nothing of the kind.  I am completely at peace with my situation yet there is always, always hope that there will be a breakthrough, particularly in the case of M.E. and MCAD, and a treatment will emerge which will give me back at least a portion of my healthy life.  But in the meantime I have to live with my diseases and stop wasting my precious energy searching for the impossible.

When I come across people in denial, especially if they’ve been ill for several years, the blunt side of me wants to say “FFS.  Which part of the words chronic or incurable is it that you’re not understanding?!” which I know sounds harsh, but if there were an effective treatment out there none of us would be suffering.

Ironically, it’s only when I gave up hope of ever recovering and accepted that I was sick and I’d be sick forever that I actually started to improve.  For the first 6 years I’d used every ounce of emotional, mental and physical energy I had trying to research and try treatments.  But my poor brain wasn’t well enough to be on every forum known to mankind or to be spending hours each day reading other people’s stories.  My emotions weren’t well enough to cope with the continual excitement and hope of trying a new therapy and the inevitable grief and depression when it didn’t work, or more usually made me even sicker.  My body wasn’t well enough to cope with weekly trips to the therapist and the hours and days afterwards spent trying to recoup my energy.  In trying to get better I was actually making the whole situation worse.

However, it’s absolutely pointless telling people who are in denial that they are in denial because they’re not ready to let go of their old life and who can blame them?  All you can wish is that they finally find peace and acceptance, which might not make them physically better but will definitely make them happier.

 

Comparisons

Blimey, I seem to have a lot to say this week!  I blame my hormones, I’m feeling quite arsey 😉

I read an article on The Mighty about comparing all illnesses to cancer which really resonated with me.  Chronic illnesses are trivialized in general and M.E. is near the bottom of the chronic illness food chain.  It’s not seen as a ‘real’ disease to start with and certainly not one which deserves a huge amount of empathy or understanding.

I’ve lost count of the number of times my tests have come back normal and some well meaning medic has said to me “good news, there’s nothing sinister”.  In other words, there’s no cancer.  Which, don’t get me wrong, is wonderful but I’m still left being unable to eat, or passing out, or in agonizing pain with no explanation and consequently no treatment.  For 20 years.

One of the most hurtful things my Mum has ever said to me is about her sister, who sadly died of ovarian cancer.   “Your poor Auntie, I’ve never seen anyone suffer the way she did for those two years.”  Er, what about your daughter who spent ten years in bed having seizures, unable to eat anything solid for a whole year, unable to speak for a whole year, whose hair fell out and has not grown back, who was terrified, isolated, in dreadful pain, unable to sleep, whose feet turned in so she was unable to walk, whose hands turned in so she couldn’t even pick up a cup………..the list could go on and on.  And who now faces a future of chronic pain, increasing disability and the daily threat of anaphylactic shock.   My Aunt had a loving husband, three loving children and partners, a Macmillan Nurse, a fabulous GP, attended a support group for cancer patients every week and was hospitalized when needed.  Not left in a bed alone for a decade without care of any kind.  She was 76 years old, with a full life behind her, family, memories…….not 26 with her whole life ahead of her.  She did pass away but she’d lived first.

My cousin’s husband is sixty and two years ago was diagnosed with chronic leukaemia, a disease you can live with for many years and which often doesn’t even need treatment.  He is receiving excellent care, has three monthly checkups and every time anyone meets his wife they ask after him and offer help and support.  No-one even asks after me any more.  My Mum regularly sees my cousin and knows all about her husband’s treatment, yet when we speak she’s totally lost interest in how I’m feeling.  Well, it has been 23 years so I’d imagine it gets a bit boring listening to me reel off which part of my body is hurting today.

I’m not comparing the two diseases, simply pointing out the different way cancer is treated by both medical staff and the public compared to a chronic illness.  It’s like we should be glad our disease hasn’t killed us (even though both my M.E. and MCAD have had a bloody good go) and of course I am, but that doesn’t negate the lifetime of suffering I’ve gone through.  I’ve had back pain for 40 years now and when you’re allergic to painkillers and can take nothing to give yourself a break trust me when I say it really gets you down, especially on top of the thirty odd other symptoms I also have.

From the get go I’ve been told I should be “glad it’s not cancer” but I’m not sure why I should be glad to have illnesses that have made me spend half my adult life in bed too exhausted to feed myself, have robbed me of a husband and children, holidays, fun, employment, money, sleep, food, the ability to walk or even sit up some days, pain so severe I want to take a knife to my body parts, nausea, retching so severe I’ve damaged my oesophagus, my ability to read, speak or write like I once did and all the things which really make us who we are and our lives meaningful.  Since when did that become trivial or irrelevant?

There are excellent provisions for people with cancer.  Specialist hospitals, nurses, and clinics and if you have cancer you can get to see a GP the same day – they might even come to see you.  Yet there is nothing for M.E., EDS or MCAD in the whole of the north of England.  Not a specialist Consultant, not a specialist Clinic, not specialist Nurses or specialist Physios and if I want to see my GP it takes me 6-8 weeks.  I receive no care whatsoever.  And it’s not right.  It’s not right to make one disease more important than any other.  It’s not right to say that one person’s suffering is worse than another person’s suffering.  It’s not right to treat one person’s pain and ignore another person’s pain.  It’s not right to recognize the emotional impact one disease has on a person and ignore the emotional impact another disease has on a person.

You can’t compare diseases.  Is Cancer worse than Parkinson’s?  Is Parkinson’s worse than ALS?  Is ALS worse than Schizophrenia?  Is Schizophrenia worse than Cystic Fibrosis?  Where is the line?  How is one disease compassion and treatment worthy and another not?  Is the possibility of death the only reason to treat disease?  What happened to easing pain and distress or do we not have the money for that?  What price suffering?

Sticks & Stones…..

I read an article written by a man living with severe M.E. in the Washington Post this week, talking about his desire for a child and the fact he knows that because of his illness he may never have one.  It’s not often men talk about things like this and I was deeply moved by the honesty of his piece.  I then made the mistake of reading the comments and was absolutely horrified.  He was called self indulgent, pitiful and told he was expecting a child to fulfill his emotional needs.  This twentysomething man, who was so ill for an entire year he couldn’t even eat solid food and has had every aspect of his young adult life taken away, just wanted what we all want yet was castigated for it.  Everyone who has a child has one for selfish reasons for heaven’s sake, you’re not giving birth for the emotional fulfillment of the foetus.

It made me think about all the statements which have been levelled at me during my decades of being sick, mostly by people I actually know and who should know better.  Here is a brief selection:

There are people in the world worse off than you.
My own Dad said this to me when I was unable to walk, eat or speak after having meningitis, but it’s also been levelled at me right here on my blog.  To tell someone this at their lowest ebb beggers belief, particularly when the person making the comment isn’t even sick, or has no concept what living with chronic pain for 40 years, or being bedridden for a decade without any health or social care, is like.

I don’t know how you live with it all – I know I couldn’t.
This was said to me by my Step-Dad just the other day, and although people who say this are trying to empathise it irritates the life out of me.  I don’t actually have a choice.  I either live with my diseases or I top myself.

But you’re always so happy and smiley!
The implication being that things can’t be that bad because I’m not suicidally depressed.  Little do they know that some days I am suicially depressed, but I’ve found going round admitting this to people waiting at the checkout in the supermarket is a bit of a conversation killer.

I know how you feel.
When this is said to me by another patient it’s comforting.  When it’s said to me by someone who works 40 hours a week then goes mountain climbing on a weekend I want to say “are you kidding me?!”  #nofuckingcluemate.

You live on your own so can’t be as sick as you make out.
This was levelled at me by other people with M.E. on Facebook.  All I can say to this is that doctors don’t say you might not survive the night if you’re not pretty sick.  And when you’re denied home care and your only choice is to crawl to the kitchen to make a bowl of cereal or die of starvation it’s amazing what your body can do.

I wish I were that skinny/looked that good when I’m ill.
For a whole year I was too weak to eat solid food, and there are times now when I’m so nauseous I can’t eat a damn thing, so yes I do have periods where I drop a lot of weight.  That someone would find a 6 stone (84lbs) grown woman attractive and want to be that skinny themselves appalls me.  My reply is usually “well, try being nauseous every day for 6 months and you too will drop a dress size”.

It’s nice to see you out, you must be feeling better.
I’m not sure what part of chronic, incurable disease many people fail to understand, or the fact that when you live on your own it’s impossible to be housebound for 23 years – you occasionally need to go to the cashpoint for some money, or to the chemist for a prescription no matter how horrendously ill you might be feeling, particularly when you don’t have a Carer to go for you.

But you look great!
I never know what I’m supposed to say to this.  What exactly is sick supposed to look like?  Even when I weighed 6 stones and was at death’s door I was told I looked well, and these days I wear a wig so my hair looks ‘healthy’ even though it’s actually dropping out, I wear concealer for the pain/insomnia induced dark circles under my eyes, and tinted moisturizer for my pallor, without which I look like shit but which woman wants to go round looking like shit especially when you’ve been ill for half your life?!

We’ll go when you’re feeling better.
You’ll have a long wait then.

I wish I could lounge around doing nothing all day.
This probably winds me up more than any other comment and my reply is usually “OK, I’ll swap you your husband, children, grandchildren and holiday home in Lanzarote for my 24 hours a day of pain, poverty, exhaustion, isolation and anaphylactic shock.”  #nobheads.

I’ve been amazed at the judgements made about my illnesses over the years and even more astounded that people think they have some kind of right to tell me to my face what they think about my life, like being chronically ill is some kind of career choice and if I only took their advice I could have a better, more fulfilling and worthwhile existence.  These people have no concept of the strength it takes just to get out of bed in a morning, let alone dressed or showered, and that you do it all with a smile on your face because you’re terrified that if you don’t act all happy clappy you’ll be accused of being depressed and you’ve been fighting the ‘all in your head’ stigma for the better part of 2 decades.

I won’t lie, I’ve come across some sick people on the internet who do nothing but whine and wallow in self pity and even I want to slap them and tell them to get some therapy, but for the most part chronically ill people are the strongest, most resilient, empathetic, intelligent and caring people I know and deserve a shit load more recognition for their fight than they ever receive.  Healthy people could learn a lot from them.

#wearewarriors

 

 

Pets

I have been pesco-vegetarian for 27 years, long before it was trendy or commonplace, and I have progressive views on animal welfare.  I’ve never discussed my views on my blog, though, because it feels a bit like I’m forcing my beliefs on other people and I hate that.  Having said all that, my opinions on keeping pets will come through in this post, not to make anyone feel upset or guilty or ‘wrong’ but because my entire blog is written from my own perspective and my perspective on animal welfare is one of my strongest.  Before anyone flips out, please bear in mind that I am entitled to my opinion and absolutely nothing you can say to the contrary will change it so basically don’t waste your breathe telling me how fabulous dog crates are.

I’ve owned a pet since I was 6 weeks old.  Over the years I’ve shared my life with cats, rabbits, horses, dogs, even a pig (which was slaughtered when I was 11 and probably planted the seeds of my aversion to eating meat).   I had a chaotic and often lonely childhood and my pets gave me comfort, joy, companionship and unconditional love – I don’t know how I would have survived without them.

Looking back, however, we as a family made a lot of mistakes in our pet ownership.  For example, we got a beautiful, intelligent, loving Labrador/Collie dog then left it on its own for 8 hours a day.  The poor thing had a lonely, understimulated and miserable existence and I feel guilty to the bottom of my soul for that and still, nearly 30 years after his death, apologise to him in my prayers.   We owned a rabbit that was kept in a tiddly cage for most of its life and even though I was only 9 years old at the time and didn’t know any better I still feel guilty about it.  I am absolutely against keeping pets chained up or in confinement and that includes birds and fish.  I also think dog cages are barbaric.  I know it’s currently trendy to jail dogs, but then it used to be trendy to send children up chimneys until we came to our senses and realized it was cruel.  I’m now going to have comments from people who tell me their dog loves its cage, my answer to which is great, dogs love to have a quiet, comfy place to sleep just so long as you never shut the door and it’s free to leave whenever it likes.  I do have to put in a disclaimer here that caging an animal for short periods for health reasons, eg if recovering from surgery, is fine and in the best interests of the dog (even if the dog doesn’t realize it).  I’m even against owning horses to ride, even though I had two as a kid.  There’s a reason we call training horses ‘breaking’ them, and if you have to break a horse’s spirit to get it to do what you want I can’t see how that’s justifiable.  Plus, kicking an animals’ ribs to make it move is cruel by anyone’s standards.

“When you know better, do better” Maya Angelou

I’m saying all this because before we own a pet we need to think about the kind of environment we can provide for it.  It’s not about us, it’s about them.  Cats, for example, are mostly nocturnal and can roam up to 4 miles each night.  If you live next to a busy road and are planning on never letting it out of the house you have to consider how healthy an environment that is and whether, much as you’d like a cat, it’s actually suitable for the cat.

I already had a moggy when I got really sick with M.E.  I’d adopted him from a rescue charity when he was 6 weeks old (all my pets have been rescues) and I loved the bones of him.  I installed a cat-flap in the back door and he could come and go as he pleased, which he mainly did at night and slept the day away with me on my bed.  He was no bother to look after, even for someone as ill as me, I just had to feed him twice a day and that gave me a reason to get up in a morning.  That cat absolutely kept me alive.  On the days I felt so ill and was in so much pain I didn’t know if I could carry on I’d look at him and wonder what would happen to him if I killed myself.  Who would care for him?  Who would love him like I did?  The answer was no-one (my parents weren’t allowed to own pets in their apartment block) and I knew I had to survive for his sake.  He was tragically run over in 2002 (I think he’d become quite deaf in his old age) and I was distraught.

I now had no reason to get out of bed each day, had no-one to chat to and no-one to to cuddle.  My days felt devoid of purpose, bearing in mind I was still almost totally bedridden and very poorly, and even though I was still grieving some weeks later my parents took me to the rescue centre and we came home with another cat, a 2 year old Tom.  Being young, he was a different kettle of fish to my previous boy and much harder to look after because he was still at the stage where he wanted to play.  I found the first few months hard work, and wondered if I’d made a mistake, but eventually we settled into a new routine and developed a very special bond.

Fast forward 12 years and he developed chronic kidney disease.  We were never away from the vets in the final year of his life and it’s situations like this you have to bear in mind when you take on a pet.  Not only the expense (I spent £1000 on him that year) but the effort involved which, when you’re ill, is immense.  Luckily my M.E. had improved a fair bit by then and I was able to drive again – I would never have coped if I’d still been bedridden and I genuinely don’t know what would have happened.  I finally had to have him put to sleep in 2011.

I had such a special bond with that cat that I couldn’t even contemplate replacing him with another moggy, yet once again my days were devoid of purpose and I felt really lonely without a furry companion.  I wondered if I were well enough now to consider getting a dog and spent some weeks researching the kinds of breeds which would be suitable for someone as ill as me, eventually deciding on a Chihuahua which I read didn’t need much exercise.  I don’t agree with buying pets, though, when there are so many in rescue needing a home but as I live in a farming community all the rescue dogs were either Collies or Staffies.  I spent weeks trawling the rescue centres online but the only small dog I saw was a little chap called Bertie.  He was a 2½ year old Miniature Schnauzer, a breed I’d never even heard of, so I spent a few more weeks learning about Schnauzers and eventually decided to go and have a look.

He was actually much larger than I’d imagined (he’s 1¼” taller than the breed standard) and I was still unsure whether he was ideally what I wanted, but as he tentatively put his paw on my knee and looked up at me with huge, worried eyes I instantly fell in love.  Add this to the fact he shared a birthday with my Nanna, and had the same name as one of my family members and I couldn’t ignore the signs that he was meant to be mine.

Despite being young, Bert was a really laid back dog.  In fact, I got so worried about how much he slept I took him to the vet for a check-up, but was told he just had a chilled personality and to be grateful 😉  But that’s kind’ve where my luck ended.  I’m a terrible sleeper at the best of times, so Bert’s bed was put in the Utility room and he slept downstairs.  But he woke every morning at 4am and started barking.  To cut a lonnnng, stressful, exhausting story short it took me 2 months to get him to sleep through, and even now 6 years later he still wakes me at 6am every single day of the year and I am permanently shattered.  I thought I’d be able to leave Bertie on his own for an hour or two if I needed to, not knowing that he had severe separation anxiety.  Despite trying various behaviour modification techniques we’ve never managed to conquer this, so I need a dog sitter every time I need to leave the house.  He had various other emotional issues, including weeing in the house despite being house-trained, and it took about 9 months and a lot of hard work for me to get these sorted out.  He’s also a barker.  Terrier breeds do tend to yap for England, especially the boys, and Minis are renowned for being vocal.  Again I tried every trick in the book and in the end had to admit defeat – he just loves the sound of his own voice and will bark at a leaf floating past the lounge room window 😉  Some days, when I have a migraine or am particularly sound sensitive, this drives me to absolute distraction and is actually physically painful.  Mini Schnauzers don’t need huge amounts of exercise but they do still need to go out and obviously my walking ability is severely limited.  Having thought about this I walked him on my little mobility scooter on an 8m extending dog lead.  Bert, though, was a puller and I learned some years later that he’d never been taught to walk on a lead by his previous owner.  Our walks became a nightmare and I often came back in tears, with my painful joints in tatters.  With that, his noctural wakings, barking, emotional problems, going nuts at other dogs and general lack of being trained I was so stressed, exhausted and ill at the end of the first month that I rang my Mum in floods of tears completely overwhelmed and unable to cope.  I had no idea that having a dog was going to be that hard and I was simply too ill to manage.  She told me that my health came first and that I should return him to the pound but, as my best friend recently told me “you are one of the most loyal people I know” and for me it wasn’t an option.  Bert was family, I loved him and I would make it work no matter what.

We are apparently lucky to have one of the country’s leading dog behaviour experts in Cumbria, so I rang him for advice.  He told me I’d chosen the wrong dog and that there was no way of teaching Bert to walk to heel on a mobility scooter.  I put the phone down in floods of tears, and a fierce determination to prove him bloody well wrong.  Just because you’re disabled doesn’t mean you shouldn’t have a dog, even if the dog has issues.  Particularly if the dog has issues.  So I googled, went on forums and read everything I could about training difficult dogs and 2 long, stressful, tiring, frustrating years later Bertie and I finally came to an understanding.

We are now a team.  He walks beautifully next to my mobility scooter.  He comes when called (mostly 😉 ).  He sits, downs and stays when asked (mostly 😉 ).  He still barks for England, but no longer hurls himself at visitors and instead sits nicely by the front door when the doorbell rings waiting for his treat for being a good boy.  He’s brilliant with children.  Hopeless with other dogs.  But I can take him anywhere and he is golden.  In particular, he loves riding in the car sitting on his booster seat in the back, wearing his doggie seatbelt, with his head stuck out the window, beard and ears flapping in the wind.   We get constant compliments on what a brilliantly behaved pooch he is and I smile and think to myself ‘if only you knew’ 😉

He exhausts me, and makes me joyful, in equal measure.  I found taking him out twice a day on my scooter all too much, so now employ a dog walker for his morning walk which means I can no longer afford to buy clothes, or joint braces or other vital stuff for myself.  I insured him at £17.50 a month which, 2 MRI scans, 2 x-rays, an operation on his leg, drug induced vomiting after eating rat poison, worms, several fatty tumours, several ear warts and a bout of colitis later, went up to £70 a month so now cripples me financially.  I also have to employ a dog groomer who comes to the house every 6 weeks.  He has food intolerances, so has to be fed an expensive dog food and has to take supplements, which are another drain on my limited funds.  Without him I’d be monetarily so much better off but emotionally so much poorer.

Having a pet when you’re ill isn’t impossible, but it is a huge committment and one which shouldn’t be taken lightly.  Looking after a pet well can be stupidly expensive and absolutely exhausting.  No matter how ill you are, their needs come first.  You can’t decide one day that you’re too tired to walk your dog, or that you don’t fancy going out because it’s chucking down.  No matter how ill I’ve ever been over the past 6 years Bertie has never once not been walked twice a day, and if I couldn’t do it I got someone else to do it for me.  They may get sick at some stage, so you have to consider how you’d pay for that or if you have the resources to look after an ill animal.   Cats and dogs can live until they’re 20, so you do have to look ahead and think about the future.  But if you do feel able to take on a pet  the rewards are beyond words.  Bertie woke me at 5.30am this morning (I eventually moved his bed to my bedroom) and even though I was annoyed at being woken at the crack of dawn (again) one look at his furry little face and I just smiled.  He makes me laugh and brings me joy every day of his life and I can’t imagine being without him.

 

 

Fear & Worry

Over the last couple of decades of being sick I’ve ‘met’ (mostly online) hundreds, if not thousands, of people.  Many of them are beside themselves with worry and fear and I want to say to them “mate, take a chill pill” but that’s because I’m much further along the road than they are in dealing with chronic illness and have realized the futility of worry and fear.  I’m not trying to tell anyone how to feel, but just thought I’d share my journey with these emotions and how I managed to end up in a place of relative calm.

The first two years I had M.E. I was worried sick.  I couldn’t work, my finances were a mess, my relationship was falling apart and although my Doctor kept telling me I’d be better in two years because everyone with M.E. got better in two years (!), it wasn’t happening.  Then I got meningitis and all hell broke loose.  I thought I’d been sick before but it was nothing in comparison to the living death of severe M.E.  Now I worried every day that I might die, and nearly did.

After 4 years, I realized I couldn’t live with the worry about my relationship falling apart for another second.  So I dumped my boyfriend.  It was painful, but I needed to concentrate on my needs not live in fear every day that he would find someone else or dump me.  The worry was exhausting and I didn’t have the energy for it – I was too busy trying to find the energy just to breathe in and out.

After year 6 of being bedridden, and worrying every day I might die, I finally decided that dying would be a relief.  I was so tortured by my symptoms that I actually prayed to not wake up in a morning.  I stopped fighting, and stopped worrying, and that’s when I started to recover.  Weird huh?

My biggest fear M.E.-wise these days is that I’ll relapse and end up bedridden again.  I honestly don’t think I could live through that twice, so my internal dialogue tells me I don’t have to.  If it comes to that I’ll just kill myself and save myself the torture.  So now I don’t worry too much because I have an opt out.

My Ehlers-Danlos is currently the least of my worries.  Yes it’s painful and can make me miserable, but at the moment it’s liveable with.  If I were to think about my old age (which at nearly 50 isn’t that far off!), living in poverty, becoming increasing disabled and having no help or care I’d be worried stupid, so I simply don’t think about it.  I have enough on my plate getting through the day without panicking about a future which is at best uncertain – I could get run over by a bus tomorrow and all that worry about the future would have been for nothing.

My Mast Cell Disease, on the other hand, is a different kettle of fish.  I live every single day in fear of anaphylaxis and ultimately death.  I have to take H2 antihistamines for my GERD, without which I am suicidal with pain, yet after every single tablet I hold my breath for an hour waiting to have a reaction.  I’ve taken H2s before and tolerated them fine for 18 months before my body rejected them, so it’s not an unreasonable fear to have.   Each time I take a pill my internal dialogue goes something like this:

What if I have a reaction?  What if I can no longer tolerate them and have to live with horrendous acid reflux?
Well Jak, what if you do?
But I can’t live with horrendous acid reflux!
You might have to.
But I CAN’T.   It’s too painful!
You haven’t tried PPIs before, maybe you can tolerate those instead.
Yes, you’re right, maybe I can.
So if you do become allergic to the H2s again, there’s always the option of the PPIs.
Yes, I’m comforted by that.

By which time at least half and hour has gone by, and I realize I’m not having a reaction and I breathe a huge sigh of relief and get on with my day.  It is tiring though, living with that level of fear and having to be strong and give myself a stern talking to every day of my life.

The thing about worry and fear is that, for the most part, they are absolutely futile.  Worrying about having a relapse won’t stop me having a relapse.  Worrying about having anaphylaxis won’t stop me having anaphylaxis (in fact mast cells love stress, so it actually increases my chances!).  When I first got sick I worried about money, but here I am two decades on and I’ve managed.  I worried when I dumped my boyfriend that I’d be lonely, and I am at times, but at others I’m glad I’m single and can do my own thing – I honestly don’t think I would have made the recovery from M.E. I have if I were still in a relationship because other people’s needs take too much energy.  I worried when I was diagnosed with hEDS that the illness would progress and I’d end up in a wheelchair, and the illness has progressed and while I’m not in a wheelchair yet I am a mobility scooter user and I cope.  I worried when I was ill-health retired from work that my life was over, yet here I am still meeting new people and doing new things and if I’d been working full-time I would have been far too busy to take up photography, without which my life would lack passion.

It’s natural to worry but you can’t let it take over your life.  None of us, healthy or sick, knows what the future holds.  I bet the day PC Keith Palmer went to work he didn’t expect to be stabbed to death by a terrorist.   Living each day as it comes is all we can realistically do.  If it’s a good day we cherish it, if it’s a bad day we do our best to get through it, knowing that tomorrow might be better.  After a decade of being bedridden I never thought I’d be driving, walking, owning a dog, writing a blog, have moved house, be winning awards for photography……..or be happy.  In the bleak, dark, wee hours of my worst nights I never imagined for a second that I’d be living a rich, fulfilling, joyful life……….yet here I am.  Anything is possible.

Medicine for the soul

My family invented the word dysfunctional.  You have no idea what my childhood was like and it’s a wonder I survived with my sanity.  Having said all that, one of the reasons I did survive with my sanity is because my parents are funny.  I don’t mean they need their own comedy show, just that even in the blackest moments they can say something ready sarcastic that just makes me laugh and it’s medicine for my soul.

Even now, when my relationship with my Mum is somewhat strained, we still share humour.  It’s a very northern, dry, sarky humour which usually involves swearing, and that not even all British people understand, but it gets me through the day.

I’ll give you some examples:  when I was horrendously ill with M.E. I weighed under 6 stones (80lbs) and just being touched was painful.  I was crying one day and my Mum gave me a tight hug.
Me: ‘I can’t breathe Mother’
Mum: ‘At least you’re being quiet, that bloody wailing was getting on my nerves’
Me: ‘So you’re basically trying to kill me to shut me up?’
Mum: ‘Is it that obvious?’
Me: ‘Where’s Ester Rantzen’s number, I’m reporting you to Child Line’
Mum: ‘Will Ester Rantzen cuddle you when you’re upset?  Noooo!’
Me: ‘Well at least she won’t try to murder me’
Mum: ‘You’re so bloody ungrateful’ 😉

My parents do the Lotto – Euromillions on a Friday and the UK Lotto on a Saturday.  This is Sunday morning’s conversation:
Me: ‘Did you win the lotto?’
Mum: ‘Oh, we haven’t checked it yet, pass us the tickets’
Me: ‘OMG we could be multi millionaires and we don’t even know it’
Dad: ‘What’s this “we” business.  You’re not getting any of it’
Mum checks the tickets: ‘I’ve got one poxy number’
Me: ‘What bloody use are you?  I wasn’t born to be poor.  I need parents who can keep me in the manner to which I’d love to become accustomed.  I wonder if it’s too late for me to be adopted?’
Mum: ‘Your Dad and I have been asking the same question for the past 30 years’ 😉

When I leave their apartment, my Dad will shout after me: ‘Be good!’
Me: ‘I’d love the opportunity to be bad but I’m too bloody exhausted!’

Us discussing Dad’s dementia and whether he should be driving:
Dad: ‘I agree, going through a red light isn’t the best’
Me: ‘Yeah, it is pretty dangerous.  You could kill someone’
Dad: ‘Or damage the car and it’s only 12 months old.  Would that be covered under warranty?’
Me: ‘What?  The killing someone or the dent in your bonnet?’
Dad: ‘The dent obviously, even I know you can’t claim back on your insurance for running someone over stupid’ 😉

In every day life I come across some seriously miserable people.  My next door neighbours are two of the most miserable gits on the planet despite the fact they have a wonderful life, and my elderly neighbour on the other side is one of life’s ‘glass half empty people.’  I went to visit her on Sunday afternoon.
Mary: ‘Oh it’s lovely to see you, it’s been a long, quiet day’
Me, feeling sorry for her: ‘Have you not seen anyone today then?’
Mary: ‘No’
Then a bit later on in the conversation she mentions her daughter & her husband, who live down south.
Me: ‘Oh, so you’ve seen them recently then?’
Mary: ‘Yes, they’ve been staying with me this weekend’
Me: ‘When did they go back?’
Mary: ‘About 10 o’clock this morning’
!!!

I really struggle to get my head around miserable, negative people.  Obviously there are days when I can’t see the positive in anything, which is normal and understandable, but the majority of the time I can always find something to smile about, even if it’s just telling Bertie he’s gassing me with his smelly farts and that if he doesn’t stop pumping I’m sending him back to the Rehoming Centre 😉  And I’m always pleasant, no matter how much pain I’m in, how little sleep I’ve had, how nauseous I feel or how exhausted I am.  I always take the time to smile and say hello to anyone I meet, even if the very last thing on earth I feel like doing is making small talk.  However, there are some people who live in my village who, if they were to smile, their bloody skin would crack and who grunt “morning” at me with their heads down.  And one of my postmen has a face like a slapped arse.  What sort of a way to live is that?  Grumpy bastards.

A smile costs nothing and being able to make someone laugh is one of life’s greatest gifts.  My parents may have fucked with my head as a child to such an extent I needed medication and 2 years of therapy to get over it, but I will be forever grateful that they also made me laugh until my sides ached.  If you have people in your life that light you up with laughter be grateful.