Foot pain

Jaysus, I had no idea how painful it is to walk when your feet hurt and mine have been hurting  for some considerable time.  I first started having problems in about 2011 – not with my feet but with the inside of my knees.  I have high foot arches at rest, but when I stand and bear weight my weak ligaments cause my arches to collapse which makes me flat footed.

Photo of high foot arch

High arch at rest

Photo of collapsed foot arch

Flat feet on standing

When you have flat feet, your ankles roll in which means your knees and hips also roll in, causing a variety of problems from bunions to pack pain.  I have ‘knock knees’ because of my poor arches and this eventually caused strain, and therefore pain, on the inside ligaments of my knees.

Image credit Gait Doctor

I asked for a referral to my local Podiatry department and they gave me some basic Slimflex insoles to try, to which they added an arch support.  These support the ligaments so that the arches don’t collapse and help correct the position of the feet and consequently ankles, knees and hips.  They did help but didn’t eliminate my knee pain.

My original insoles had a 3½ degree arch support, so this was increased to 5 degrees.  It’s then that my ankle pain started and for a good hour each morning my ankles were so stiff I could barely walk, so the Podiatrist changed my basic Slimflex insoles for something more cushioned which frustratingly made no difference.

The following year I developed upper leg pain.  It was a hot, burning pain which started on the outside of both thighs and travelled both into my groin and down both legs.  This was eventually diagnosed as Greater Trochanteric Pain Syndrome and ended up with me being on crutches for 9 months.  I couldn’t stand, sit or lie without pain and barely slept as I couldn’t find a comfortable position in bed.

Image credit Mr Ilan Freedman

I wondered if this new hip pain was down to my orthotics so was referred for custom made insoles.  I waited 10 months to be measured and for the insoles to be made on the NHS, and they made my feet so painful I couldn’t stand it (‘xcuse the pun!).  How on earth insoles moulded to the shape of my own feet could make the situation ten times worse astounds me and it was after that the foot specialists gave up saying there was nothing more they could do.

Picture of an orthotic custom made insole

Look how curvy my feet are!

I paid privately to see a biomechanics expert, who turned out to be as much use as a chocolate fireguard.  She gave me some super duper shock absorbing insoles which helped my knee pain but gave me ball of foot pain which I’d never had before and charged me £80 for the privilege.  Holy schmoly it was like walking on the tip of a red hot poker!

If I didn’t wear orthotics my knees, hips and SI joint killed me and if I did wear orthotics my feet and ankles killed me.  Rock v hard place.

I was convinced there must be some insoles, somewhere, which would cure all my pain and eventually settled on G8 pros which are worn by cyclists.  They had adjustable height arch supports (v. clever!) which could be moved either up or down the foot and I had great hopes for them but frustratingly they didn’t help either.

Once my body gets an injury it tends to never fully go away and I develop a weakness there.  I’ve gone from having no foot pain, to having ball of foot pain, which migrated to outer foot pain which migrated to pain on the top of the first joint of my 2nd toe.  If I wear an insole which cures my ball of foot pain it causes either outer foot or toe pain and visca versa.  It’s soooo frustrating.  My inner knee pain has never fully gone and my greater trochanteric hip/outer thigh pain still comes and goes for no reason I can put my finger on.  In addition I’ve had morning ankle stiffness now for several years and I have no idea why.

This year, my outer foot pain has been the most troublesome and I’ve now bought myself some Salford orange flex gel insoles, to which I’ve added my own 4 degree arch support.  They’re one of the best insoles I’ve tried for my foot pain but have increased my knee pain (I’m sitting here with my inner knees on fire and I haven’t gotten out of bed yet!).  So I’m now wearing Boots knee supports which help my knees.  You can guarantee though, that now I’ve corrected my feet and knees my sodding hips or SI back joint will start to hurt – I cure one thing only to make something else worse!

It doesn’t help that I am receiving no help or guidance for my EDS and am just having to muddle along myself.  I’m not a biomechanical expert, a podiatrist, physio or orthotist and haven’t a clue why my body is packing up on me.  I also pay for all my orthotics, aids and joint supports which, when you’re on a low income, is bank busting (my new insoles were nearly £50, my knee supports £40, the G8 insoles I tried were £80, my crutches were £70 because the NHS ones crippled my wrists, and so on ad infinitum).

Y’know the story ‘The Princess & The Pea’?  I’m convinced me and her are related.  The teensiest tiniest thing seems to set my pain off and I wake each morning feeling like I’ve gone 10 rounds with Amir Khan.  The only difference is at least she got a freakin’ Prince at the end of it 😉

 

 

 

Liberty & Hope

I have a Permanent Health Insurance policy (PHI) which I took out in 1992.  These types of insurances provide you with an income should you be unable to work due to ill-health and mine has been paying out for many years.  Thank God for it, because if I’d had to survive on state benefits when I became ill I would have lost my home (if you rent a house in the UK you get housing benefit, if you have a ginormous mortgage you get diddly shit).  My policy ends at 60 when I was supposed to retire and receive the State Pension.

However, in 2011 the Government changed the retirement age for women in the UK from 60 to 67, which has massively impacted my finances.  My insurers have refused to extend my PHI to the new retirement age and I wrote about how it’s affected me in this blog post and this one.   The change in the retirement age discriminates against me as a disabled woman and I’ve been trying for 6 years now to get someone to take on my case.  No-one has helped.  Not my MP, not HM Treasury, not the Equality Advisory Service, not the Disabled Law Society,  not the Financial Conduct Authority nor the Financial Ombudsman or any of the ten specialist Solicitors I’ve approached.  They all agree I’m being discriminated against but there is a clause in the Equality Act which excludes existing insurance policies, which basically means I can be treated differently to everyone else in the country and it is lawful.

The unfairness of this has, at times, driven me demented.  Either Equality Laws apply to everyone or they don’t.  You can’t cherry pick who can be discriminated against and who can’t.  Just because I took out my policy pre-2011 shouldn’t mean it’s OK to treat me differently to healthy people, or differently to disabled men whose PHI policies already extended to 65.  I now face seven years in my sixties where I will have to survive off £100 per week Employment & Support Allowance, which barely pays my Tesco grocery bill let alone my gas, electric, council tax, house, car and mobility scooter insurance & breakdown cover, TV licence, petrol (no buses where I live and it’s not like I can bike the 60 miles for my Hospital appointments!), water rates, internet (without which I couldn’t physically survive as I live 7 miles from my nearest shop so get everything online, even my prescriptions) or the help I need, eg. someone to clean my house.  If I don’t get the law changed I will face several years of abject poverty.

My very, very last hope was to contact the Human Rights organization Liberty.  They specialize in unlawful killings, torture, deportation and other more pressing issues than mine and I didn’t think for a million years they’d be interested in disability or sex discrimination, so I literally wept yesterday when they said they might fight my corner for me.  They are, apparently, already dealing with a pension age discrimination case and mine would tie in with that.  So I’ve had to send them all my details and then play the waiting game to see if they will help.  Please God may they help, because I’ve no-one else to turn to.

They are interested in hearing from anyone else in the same position as me, so if you live in the UK and are claiming on a PHI policy which still ends at 60 please let me know via the comments and I’ll email you.

Weekly roundup

I’ve been feeling rubbish for a month now, with particularly bad ‘brain fog’.  Both my back pain and insomnia are the worst they’ve been in years and my get up and go has got up and gone.  My joints are stupidly stiff, particularly in a morning, and there isn’t a ligament, large or small, which doesn’t hurt.  Yay.

I’ve not had a cold or a virus, not been under any different stresses to usual and not been doing or eating anything I shouldn’t, so I can only put it down to my hormones which are definitely on the rampage.  My endometriosis pain is really bad every single day at the moment and I’ve no idea why that should be other than my peri-menopause is ramping up a gear.  I feel like I’m having a permanent period only without the bleeding – my worst nightmare.

However, life carries on and this week has been really busy.  Wednesday I did the 60 mile round trip to the city for Mum’s oxygen assessment for which we’ve waited nearly eight months.  It’s a dedicated COPD clinic and the physios there were lovely.  They were mortified that my Mum had lung surgery 5 years ago and has not had a single appointment since with a dedicated COPD team nor any kind of rehab, and we haven’t been given a scrap of information on her disease, how to manage it or what to expect as it progresses.  That’s because there is no COPD Clinic where we live, but just because we don’t live in a city doesn’t mean we should have a complete lack of health-care for this terminal disease.  It’s a bloody outrage.  The outcome of the appointment is that Mum’s breathlessness isn’t so much a result of a deterioration in her disease (although she is in the ‘severe’ category) but more to do with her absolute lack of fitness coupled with her poorly lungs.

Thursday I had to starve myself until 2pm ready for my gallbladder scan.  I knew I didn’t have gallstones but they did find 2 small polyps.  I seem to be riddled with polyps as they also found no less than 11 when I had my first stomach endoscopy, some of which were really quite big.  They aren’t common in the general population and I would guess are mast cell disease related (there is research which shows increased mast cells in endometrial polyps and some debate as to whether mast cells are implicated in both nasal and colon polyps which have become cancerous).   Polyps can turn nasty so should be monitored regularly, which doesn’t happen because my local hospital is skint and can’t afford to do preventative medicine.  I’m still waiting for an appointment to see the Gastroenterologist about my continued stomach/oesophageal pain and low iron levels, which I can’t convince anybody is just severe reflux (due to overly zealous mast cells producing too much stomach acid, and my weak connective tissue causing my stomach sphincter to be floppy and allowing the acid into my oesophagus.).  I also suspect I have endometriosis on the outside of my stomach but good luck with having that confirmed, because my local hospital missed the humongous amounts of endo in my pelvis when another hospital found it no problem!  They really are feckin useless.

Friday I had to be up at the crack of dawn as a plumber was coming to service my gas boiler and fire, so I had to empty out the airing cupboard in the bathroom.  Afterwards, I followed him into town to my parents’ house as they’ve had a godawful smell coming from their kitchen sink for ages now which, despite our best efforts, we haven’t been able to solve.  I got there to find my Dad looking totally washed out and discovered he’d been up all night puking.  He’s never ill so to discover he’s had some kind of bug was a shock.  Bless him, he’d been sick in the bathroom sink and must have given it a blockage because the water then wasn’t draining well so I had to nip up to B&Q for some sink unblocker.

My Mum now really struggles to get up off the couch, so this week got rid of one of the little sofas in their lounge ane replaced it with 2 riser recliner chairs, so while the plumber was doing his thing my Dad and I spent 2 hours repositioning all the furniture in the lounge trying to find the best place for them.  My back was sodding well screaming before I even started and my poor Dad looked like he was about to keel over.  Inbetween all that, my brother rang and asked my Dad to give him a lift to work so I went instead as I didn’t think Dad was up to driving.  I then had to organize for the old sofa to be taken away which sounds easy but was a sodding nightmare.  I felt so sorry for the Old Fella who, bear in mind is nearly 80, had hardly had a wink of sleep, been violently sick then had to clean up after himself, change the bed sheets and wash them along with his pyjamas, and was just expected to carry on like nothing had happened.  If my Mum had been up all night puking she would have expected to stay in bed and be cared for but my poor Dad gets no such treatment.

My garage is up a shared driveway and I have to pass my neighbour’s house to get to mine.  I often stop to chat to the lovely couple who live behind me but on Friday discovered a very stressed Rob who was having a mare with Amazon.  £79 had gone missing from his bank account and despite trying for 1½ hours he still hadn’t got it sorted out.  My neighbours are in their seventies and find the internet confusing, so I said I’d help.  I discovered he’d been signed up for Amazon Prime without his knowledge (he didn’t even know what Amazon Prime was) so I managed to cancel the subscription and get him refunded.  All of which meant I didn’t reach my back door until 4pm and was just about on my last legs due in no small part to the fact I’d only managed 3 broken hours sleep the night before.

Summer officially arrived on Saturday and the weather is gorgeous so Bertie and I sat by the river for a couple of hours watching the wildlife and having a much needed chill.  To me, where I live is paradise and as I lay there in amongst the buttercups, with little Sandmartins swooping overhead, sheep and lambs peacefully grazing just feet away and the gentle babble of the river in which a Heron was fishing I couldn’t help but count my blessings.  Days don’t get any better than that 🙂

 

A novel experience: part 4

As long-time readers will know, I’m trying to write a book about my journey with M.E. but it’s painfully hard and slow going as I can only do one paragraph at a time because of my dreadful brain function.  I’m determined to finish it though and have now written 70 pages (39,000 words, blimey!).  I’ve been sharing little bits here and there on my blog and in this excerpt I describe my first experience of visiting an alternative health practitioner.  I’d only been ill for 12 months at this stage and in the early days I still thought my M.E. was curable.  If only!

I raise the lion’s head knocker on the pale blue front door and tap gently, stepping back slightly as I wait.  The building isn’t quite what I was expecting.  I thought a Naturopath would have a proper clinic, something modern and medical looking with lots of pebble dash and low ceilings, but this just looks like a regular terraced Victorian house which, being as though I’m alone and don’t know this guy from Adam, is a bit worrying.  The door swings open and a row of aging yellowing teeth smile from an unkempt grey beard.

‘Jak?’ I nod.  ‘I’m Malcom, pleased to meet you’ and a thin cardigan clad arm waves me indoors.

We proceed down a short narrow hallway and I’m shown into a large, light room with a couch in the middle, the kind used by beauticians.  I’m asked to take a seat on the edge while Malcolm pulls up a wooden dining chair and gets out a clip board.  He takes my medical history right back to child hood, then I’m asked to take my socks and shoes off and lie back.  Malcolm starts firmly pressing on the soles of my feet and I’m just glad I managed one of my infrequent baths yesterday and my tootsies don’t smell like a pair of mouldy old kippers.

‘Does that hurt?’ he asks.
Owwww-a!  ‘Yup’.
‘And that?’
‘Yep’ I reply through gritted teeth.
‘And that?’
‘U-huh.’  Who knew I’d been walking about with feet this painful?­  He needs to stop with the prodding now though or I’m going to karate kick him.

‘Right Jak you can sit up’ he adjusts the end of the couch into an upright position.  ‘Please hold this in your right hand while I do your food testing.’  He places a heavy sausage shaped lump of metal in my palm which appears to be wired to a box resembling the front of an old fashioned radio, complete with large dial and swinging bright red needle.  The box, in turn, sits next to dozens of tiny liquid filled jars.  I have no clue what he’s doing and he clearly feels no need to enlighten me.  For the next ten minutes the air is filled with whistles and whirs, the clinking of glass and an occasional ‘tut’ from Malcolm.  Any second now I expect to receive contact with little green men from the far flung reaches of the galaxy.

‘Ok you can put your socks and shoes back on’ he tells me, taking the tube from my sweaty clenched palm ‘and we’ll go over the results’.  I pull on my boots and sit on the edge of the couch, legs swinging nervously to and fro like a ten year old.

‘Well!’ he declares, ‘you are probably the most allergic person I’ve ever met.  You’ve shown a reaction to apples, beans, barley, butter, cheese, lemons, milk, mushrooms, nuts, oranges, peppers, pineapple, rye, sugar, tomatoes, wheat, wine (red and white), yeasts and yoghurt.’  I stare at him like he’s just grown two heads.  ‘So I suggest you cut those out from your diet for the next three months and it should make a huge difference.  Then if you’d like to come back and see me we can re-test you to check your progress.’

Is he insane?  How is a person supposed to survive without dairy or wheat?  No toast.  No sandwiches.  No pasta.  No beans or cheese.  Does he realize I’m vegetarian?!  And I’m not even sure it’s possible to survive in a world without sugar.  If I stuck to his advice I’d be living on pickled onion Monster Munch because that’s all that would be left in my kitchen cupboards.

‘OK’ I smile politely.
‘How would you like to pay your bill?’
I’d forgotten he was charging me and become flustered.  ‘Oh, er, is a cheque OK?’
‘Yes, that’s fine.  That will be fifty pounds please.’

An entire week’s worth of Invalidity Benefit to be told that my cure is starving myself out of existence, which I’m now going to have to do anyway as he’s robbing me of my grocery money for the next fortnight.  Way to go.

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.

 

 

Weekly roundup

I’ve had a shit week health-wise.  My last period was weird and has left me feeling rubbish.  In particular my histamine is way high – I know this because I have rampant insomnia, am peeing like a race horse, sneezing, itching, my back is in constant painful spasm and I’m having some mild reactions after eating and taking my H2 antihistamine meds.  Hives are always the last thing to appear, but appear they will – something to look forward to then 😉

In addition, I’ve had some quite bad M.E. days, the kind I’ve thankfully forgotten existed.  My brain fog has been really intrusive and left me feeling like I’ve got dementia, and I literally had to stay in bed one day as I lost all feeling in my legs.  I had a very scary hour one afternoon when I was driving somewhere I’d been going to for 40 years and got lost – I genuinely couldn’t remember how to get there and ended up driving round in circles for 20 minutes.  WTF?!

My Mum turned 77 this week.  I wish I could say I enjoyed her birthday with her, but to be fair all events are marred by her drinking now and I just endure them more than anything.  She seemed to have a nice time though so I guess that’s the main thing.  She’d asked for an electric soup maker which I bought her, but when she rang me smashed out of her skull at 6.30pm to tell me she’d made her first batch of soup it kind’ve spoiled the gift for me if I’m honest.  I know it shouldn’t have but it did, and I need to acknowledge that to myself.  After my counselling I don’t get angry about it like I used to though, so that’s good.

My Dad’s been having some dizzy spells and it must have been bad because he made his own appointment to see the Doctor!  She said he has a slow heart beat and thinks maybe his prostate medication is the cause, so he’s been taken off that to see if it helps.  Lots of things can cause dizziness in the elderly though, so it’s just going to be trial and error to discover the culprit.

The General Election result was a total disaster and I bet the cocky Conservatives wish they’d never bothered.  This bloody country continually shoots itself in the foot and is, quite frankly, going to the dogs.

My best mate is also having a rough time of it, so we met for lunch yesterday and had a laugh to take our mind off things.  Thank God for her cos she keeps me sane.

Even though my brain has been fried I desperately needed a distraction from how crap I’ve been feeling, so worked on a couple of photos I’d taken.  The marble Bust one, done using my bed sheet and marble effect toilet seat!, is just OK (I can’t get the eyes right) but I quite like the horse:

 

 

Confused.com

I’ve never claimed to have any answers to my, or anyone else’s, health problems and freely admit I just muddle along with the rest of you in the land of The Confused.  And there is no more confusing a world than that of histamine, as I’m sure many of my readers have discovered.

Having said all that, I’ve been diagnosed with both Histamine Intolerance (HIT) and Mast Cell Activation Disorder (MCAD) for 4 years now and have learned and made discoveries along the way so thought I’d share this knowledge, for what it’s worth, with you.

When I was first diagnosed I knew I had to start an elimination diet because I was having anaphylaxis every time I ate.  Naively I just thought there’d be a foolproof diet online that I could follow and all would be well.  Oh, if only it were that simple!  I did, indeed, find diets online that claimed to be ‘low histamine’ and I followed Dr Joneja’s because she seemed like an expert and the diet was comprehensive………but it was a nightmare.  As a pesco-vegetarian it cut out all the foods I’d lived on all my life and didn’t tell me what to substitute the excluded foods with.  Having been sick with M.E., which decimates your digestion, for years before my mast cells exploded I knew that lack of good nutrition causes as many issues as exclusion diets solve, so I instinctively realized that simply cutting out so-called “high histamine” foods without substituting foods with equal nutritional value would be disastrous.  Bearing that in mind, I set about trying to find alternatives, eg I cut out tinned, chopped, tomatoes in recipes but substituted them with a home-made red pepper sauce.  I cut out Cheddar Cheese, but substituted with Mozzarella cheese.  I cut out fresh fish, but substituted with frozen fish which I discovered was gutted and frozen on-board the ship thereby reducing its histamine load.  I cut out spinach, but substituted lamb’s lettuce.  And so on.  It took about a year but I finally came up with a diet which was still balanced and nutritious but low in histamine (or so I thought!).

This is what I learned: if you exclude a food, try to substitute it with a food of equal nutritional value. 

After 4 months on a ‘low-histamine’ diet I stopped having anaphylaxis every time I put food in my mouth and the relief was enormous.  But many of my symptoms were still present, eg. hives, insomnia, itchy skin, nausea etc.  It took a while to work out what was going on, but I discovered that mast cells react to all sorts of things, not just what we eat, and that realistically I was going to have issues for the rest of my life.  In particular I was in my mid-forties and had begun peri-menopause and I learned that hormones have a massive impact on mast cells.  There was nothing I could do about the situation and 4 years down the line I’m still suffering the effects of wildly fluctuating menopausal hormones on my histamine load.  In addition, I react badly to stress (which with 2 sick aging parents to look after can be unavoidable), extremes of temperatures, my dog, some pollens and simply doing too much and getting too tired.

What I learned: I could not manage my MCAD using food alone.

My next big revelation was that all of the advice on low-histamine foods online seemed to contradict each other.  It took a lonnnng time to figure out why, but eventually I discovered that no-one was testing food for its histamine content and that all the lists online were based on nothing but guesswork.  I was devastated by this revelation and everything I thought I’d learned about food and histamine came crashing down round my ears.  It was then I really started to look at where the information online was coming from and wrote my ‘Histamine in Food: the Evidence’ page.  Even popular histamine writer The Low Histamine Chef can’t find a lab that will test for histamine in foods and with all her connections if she can’t find proper info on the histamine content in foods it doesn’t exist.  That doesn’t stop people occasionally coming on my blog and telling me I’m talking crap and that this food or that food is high or low in histamine, not realizing that far from me being wrong, they are wrong and when I ask them to back their claims up with hard data they never can.  Bearing this in mind, and finding sticking to a rigid low histamine diet really difficult, I started to experiment with re-introducing certain foods.  I still exclude foods which I know have been properly tested and found to be high in histamine, eg. hard cheese, aubergienes, tinned fish, soya but now eat normal yeasted bread, beans and pulses (including red kidney beans as there is not a scrap of evidence they are high in histamine), and my symptoms are no worse than before.  Having said all that, my re-introduction of chocolate was a disaster and definitely increased my histamine load, so it is still forbidden *sob*.

What I learned: only a handful of foods have been tested for their histamine content.  We have no clue whether most fruits or veg are high histamine.  So-called low histamine diets are far too rigid and unnecessarily cut out highly nutritious foods.

My next big revelation came from my lovely readers, who would write and say that although I might be tolerating lentils, or wheat, they reacted to them.  This totally threw me, so again I researched what might be going on and discovered that we are all simply individual and will react differently to our friends.  In addition, just because we’re reacting to a food doesn’t mean it’s because it’s high in histamine.  You might also have a problem with nightshades, fructose, gluten, lactose, salicylates or any number of other components in foods, whereas I might not.  This is why I don’t give advice on my blog.  For a start I’m not qualified to, secondly I don’t know you and thirdly we are all so different that it would be totally pointless in any event because what works for me might not work for you.

What I learned: we are all individual and our mast cells react differently other people’s.

When I was first diagnosed I read everything I could about MCAD………..and found that much of it was totally contradictory to my own experience.  For example, on Yasmina’s Healing Histamine website is this post about Melatonin and how research has shown that it counter-balances histamine.  I’ve had horrendous insomnia because of my illnesses and years ago tried a Melatonin supplement, which gave me one of the worst mast cell reactions I’ve ever experienced.  Wondering why, I had my melatonin level checked by a lab and discovered it was  actually far higher at 3am than a healthy person’s, despite the fact I was wide awake!  So melatonin doesn’t appear to be reducing my histamine levels, which flies in the face of this research.  The research does say, though, that mast cells produce melatonin which makes more sense – my mast cells were rampant and this would obviously mean a high melatonin output, but in my case this wasn’t a good thing!  Some of the histamine writers online are treated a bit like God and their every word taken as Gospel, but trust me when I say if Dr Afrin doesn’t have the answers yet no-one else does either.

What I learned: don’t believe everything you read.

My experience with MCAD is that it is a highly fluctuating condition, which changes over time.  For example, when I was severely ill with M.E. (which as my readers know I think is some kind of mast cell disease) I was highly sensitive to chemicals, eg. I couldn’t bear to read a newspaper because the ink used in the printing gave me asthma-type symptoms.  I couldn’t tolerate normal paints, hairspray, perfume, bleach and any number of other substances.  However, as my M.E. started to improve my chemical reactions also improved and now I don’t have any problems with smells.  My drug reactions started off fairly minor, with me reacting to just the odd medication, but over the years this has gotten worse and worse to the point where I have anaphylaxis to just about all drugs.  To make matters worse, I can start off tolerating a drug really well but 12 months, or 6 years, or 20 years down the line suddenly have anaphylaxis to it and be unable to take it ever again.

What I learned: things can change, for the good or the bad.

When I was diagnosed with MCAD I thought there would be information out there in cyberspace that would have all the answers and it came as a huge shock to discover that that information simply doesn’t exist.  This is a new area of medicine and even leading Doctors in the field are still finding their way around the complexity of mast cells and the havoc the chemicals they release (like histamine & prostaglandins) play on our bodies.  If the experts don’t have the answers yet, no-one else does.  Not me and not other bloggers or writers, and if they pretend they do they’re fibbing.  Much of the research cited online is conducted on animals or in a lab, and this often doesn’t translate to human beings.  We are decades away from any real understanding of mast cell disease and when it does happen you can bet your life the answer won’t lie in whether or not you eat Pak Choi on a regular basis!  There are diets which may help, but absolutely won’t cure you.  There are drugs you can take which might help, but won’t cure you.  There are supplements you can take which might help, but won’t cure you.  There are ways you can live your life which might reduce symptoms, but again won’t cure you.  And that’s because MCAD is currently a chronic, incurable disease.  Sorry to be the bearer of bad news 😦

What I learned: MCAD may, or may not, be manageable but certainly isn’t currently curable.

My journey with mast cell disease is ongoing, but I’ve learned a fair bit over the past few years.  You’d think this would make me more knowledgeable, but in fact it’s been the opposite and there are days I feel more confused than ever!  My biggest revelation has been that we are all basically in the dark……Doctors, Researchers and Patients………because our knowledge of MCAD is in its infancy and, much as we’d all like it to be different, no-one really has the answers to our questions yet.  Which makes me feel kind’ve adrift and alone and scared.  But I’ve had M.E. for 2 decades too and no-one knows anything about that either and I’ve survived….just.