Laptop behaving badly

Just a very quick note, while my laptop lets me, to say that I’m having computer problems and will be without my machine for the next few days.  I have a little smart phone but with stubby fingers as big as mine it’s almost impossible to text on let alone write blog posts on, so if I go quiet you’ll have to bear with me.

I know I owe some of my readers a reply to comments they’ve written – I’m not ignoring you and will be in touch when I can.

Do I need to buy a new laptop 4 weeks before Christmas, when I’ve just had to spend £320 on fixing my central heating boiler and another £80 getting the electrician out to fix the lights in my house which all kept tripping?  Hell-to-the-no!  Starting 2016 off in debt was not in my Life Plan.

Jak x

New Recipes

Fanfare please!!!  I know I’ve been promising a couple of new recipes for months (and months) and if you’d all been waiting for them you would have starved to death, but I’ve just been too busy to faff about in the kitchen.  I’d love more time and energy to experiment with cooking but, living on my own and taking care of my parents (and the dog), means there simply aren’t enough hours in the day or energy spoons in the drawer to do all the things I’d like.  Such is life.

I’ve only managed two lunch recipes, a supper recipe and a side-dish recipe but it’s the best I can do at the moment.  As with all my recipes there will be ingredients some of my readers react badly to, but hopefully you can use them as a spring board and tailor them to suit your own needs.

Mushroom pate:
I use mushrooms a lot in my recipes as they’re a good meaty texture and strong flavour, so apologies if you can’t tolerate them.  This pate is great on toast, crackers or freshly made tear ‘n share bread (shown in the photo below) and freezes well.

Low histamine mushroom pate recipe

Veg Topped Toastie:
My next offering is the closest I can get to a melt.  I used to love tuna melt panninis – proper bread and tinned fish, oh how I miss you ;-)  This is a roasted veg melt on yeast-free toast, with a sprinkling of sweet chilli sauce but you could use whatever topping you fancy.  Both these recipes available in the Lunches Section of the recipe page and the Chilli Sauce in the Jams & Sauces Section.

Low histamine roasted vegetable and mozarella melt recipe

Nut Roast:
My supper dish is a nut roast.  My version of a low histamine diet allows nuts, but I know some people react to them.  I found I don’t do very well with cashews, but can eat other types of nuts (peanuts, macadamia, hazelnuts, pine nuts) without any problems, so if you’ve had issues with nuts it might simply be worth trying a different variety.  This recipe is a bit lengthy but the result is tasty and, as a vegetarian, means I can sit down to a Sunday lunch with all the trimmings.  Nut Roast is also often served to vegetarians on Christmas Day.  The roast below is shown with roast potatoes, honey roasted parsnips & carrots, and home-made gravy.  Recipe in the Mains Section of the recipe page and the gravy recipe is in the Jams & Sauces section.

Low histamine nut roast recipe

Caramelized Red Onions
And last but not least I’ve added a recipe for caramelized red onions to the Miscellaneous Section of the recipe page.  They’re nice with burgers, the above nut roast, to accompany Quorn pasties, with Felafels or with cooked meat if you’re that way inclined ;-)  Sorry I have no photo to show you, I simply forgot to take one – if I had a working memory I’d be deadly!

Chosing joy

I’m a bit reluctant to write this post.  On my really bad days if anyone says to me it’s not the situation but the reaction to the situation that’s important I want to poke their eyes out with a blunt stick.  You cannot feel joy when you are sleep deprived, in relentless pain and sick to the very pit of your stomach, or when you can’t pay your electric bill.  You are miserable and rightly so.

Having said all that, I’m happier in my life now than I have ever been so I wanted to share with you why that might be, bearing in mind most people would say my life pretty much sucks.

After 6 years of being bedridden with ME I just stopped fighting it.  I stopped looking for the non-existent miracle cure, I stopped being frustrated, I stopped yearning for my old life.  It hadn’t helped and just made me depressed on top of already being sick as a dog.  Instead I accepted I would be horrendously ill for the rest of my life, however short or long that may be, and started trying to find some joy in each day. If I was going to die I didn’t want my last days/months on earth to be crap.

I started playing the “what if this were my last day on earth” game and now I play it every day.  If this were my last day to be alive  I would be ignoring my sickness and my pain and I would be relishing everything – a beautiful sunset, my best mate ringing for a chat, a cuddle from my dog, a soak in a hot bath.  If this were my Mum’s last day on earth I’d relish her voice, her smell, her friendship, her little mannerisms.  Try it.  It really makes you appreciative.

I also needed a purpose, some reason to open my eyes every morning.  So I volunteered for an ME charity from my bed and volunteered to help with an online ME support group.  I could only do ten minutes here and there but I felt I was contributing to the world and helping other people through my experience of chronic illness.  My suffering stopped being meaningless and started being meaningful.

As far as was humanly possible I stopped dwelling on the negative.  I stopped listing in my head all the things which were wrong and started listing all the things which were right.  Every time a negative thought came into my mind I replaced it with a positive: I’m in pain became I’m thankful for my hot water bottle.  I’m lonely became I’m thankful for my dog.  I’m skint became I’m thankful for my beautiful home.  I feel dreadful became I’m thankful for my peaceful country, my peaceful home, my security – can you imagine being sick in Syria or the Congo?  It works much of the time and the times it doesn’t I allow myself to wallow in self pity – it’s impossible to be thankful when you have your head down the toilet vomiting.

The other thing which has helped enormously is to live in the moment.  It’s a much over-used phrase but really stop and think about it.  My biggest fear is having a reaction to something I’ve eaten, and I have to eat at least 3 times a day.  That’s a lot of anxiety.  When I start to feel panicky about an upcoming meal I tell myself this “are you having a reaction now?  No.  Enjoy the moment.  Will worrying yourself stupid about having a reaction stop a reaction from happening?  No.  So quit worrying.  And if you have a reaction you’ll cope.  You have before.  It will eventually settle.”

When your life is literally down the toilet it’s easy to play the “when x, y or z happens I’ll be happy” game.  When I lose/gain 20lbs I’ll be happy.  When I find Mr Right I’ll be happy.  When my pain is under control I’ll be happy.  When I can eat chocolate again I’ll be happy.  When I’m over the menopause I’ll be happy.  When I’m well I’ll be happy”  And all the while your life ticks by and you’re miserable.

I have a friend who has a well paid job working in the one of the most beautiful places on earth.  She has no responsibilities: no children (she never wanted any) and her parents live 300 miles away so she doesn’t have to take care of them.  She works from home so no soul-destroying hour long commute on a packed underground train and, although she does travel a fair bit with her job, it’s in the Lake District with some of the most beautiful scenery in the country.  She is (apart from a few minor niggles) healthy.  She has 3 months of holidays a year, where she takes off to the wilderness for total peace and tranquility surrounded by nature and wildlife.  Most people would kill for her life yet she is depressed and constantly asks me “what’s the point to it all”?  I want to shake her.  If, tomorrow, she’s killed in a car accident or gets diagnosed with terminal cancer her last 5 years on earth would have been miserable.  Why would you waste your life like that?!

I’ve found that, because I’m ill, people want to share their ill-health with me because they’re fed up and think I’ll be sympathetic.  Er, nope.  Are you dead yet, cos if you’re not I can’t work out why you’re moaning.  I’m happier than 90% of the people I know and everyone comments on how passionate and excited about life I appear to be.  That’s because I am excited about life – it’s the only one I’ve got and it fucking beats being dead.

Today is all there is.  Fill it with joy.  Fill it with gratitude.  Fill it with purpose, passion and meaning.  Don’t sweat the small stuff.  Stop worrying about things over which you have no control.  Embrace life – it’s the only one you have.

Weekly roundup

There hasn’t been a roundup for a couple of weeks, basically because I’ve not had much to say (hard to believe I know ;-) ).  I moved house in 2004 and all I could afford was a 2 bed cottage which needed a shed load of work doing to it.  Only I have no money to pay anyone to do said work so have had to do it all myself.  Consequently it’s taken 11 years because I can only do stuff on the days I feel well enough and then only for half an hour at a time!  The past month I’ve been trying to decorate my Utility (laundry) room, which measures about 9ft x 7ft – it’s still not finished ;-)  As a result I’ve had no energy for anything else and with all the activity my joints are so painful they’re keeping me awake at nights.

Speaking of painful joints, I had my pelvic MRI scan this aft to figure out if they can see any reason for my dodgy right hip.  This is the 4th MRI scan I’ve had of various body parts and they don’t get any more pleasant.  Why do they have to have the tunnel 4 inches off your face?  You feel like you’re being buried alive!  And when are they going to make one which doesn’t sound like a freaking pneumatic drill?!  Anyways, tis done and I need to wait now for a follow-up appointment with the Reumatologist for the results.

And speaking of appointments, I decided to see someone about the purple lump on my knuckle.  Pointless trying to see my own GP as there is currently a 7 week waiting list, so I thought I’d just see a nurse and if it was anything serious she could get me in to see the Doctor.  Only there’s a 2 week wait to see a nurse – WTF?!  The lump is 6 weeks old now and more painful than when I first injured it, so I really didn’t want to wait that long.  I was told to ring up as an emergency the next day, which I did and managed to get a cancellation.

The nurse was stymied by the lump.  It’s not broken, or infected.  It’s not bursitis and there is no foreign body (that they could feel).  She called in the Doctor, who was also stumped and had no idea what the issue was (I think it’s plant thorn synovitis but wasn’t going to tell the Doctor her job, having found it makes me most unpopular).  I was told to buddy tape it for several more weeks and see how it goes, even though it’s already been buddy taped for 2 weeks with no improvement (in fact I think it’s made it worse which, if there is a tiny piece of thorn in the joint and I’m putting pressure on it, makes sense).  If it is synovitis having no treatment could result in chronic arthritis in that joint, so I’m a bit concerned that nothing is being done.

I had something absolutely lovely happen to me last week.  As regular readers know I belong to my local Camera Club.  Photography is my passion, but it is a stupidly expensive hobby if you want to be any good at it.  I enter club competitions and ideally should be printing my images at 16″ x 12″ size.  Trouble is I only have an A4 printer, so I’ve been sending them to photo labs online to be done.  When they come back the colours are often *nothing* like they’re supposed to be which means my hours of editing and getting them perfect have been wasted (example below – what is should look like on the left and what the print came back as on the right):

But I dont have £500 spare to buy an A3 printer, so I’ve just had to muddle along.  Last week, one of the club members pulled me aside and told me his wife had bought him a new A3 printer for his birthday and he would like me to have his old one…….gratis and for nothing.  Not only that, but it came with over £100 worth of ink.  This printer cost £480 new and, ok, it’s several years old now but he could still have got £150 for it on Ebay!  I was so taken aback at his generosity I felt quite emotional.  Bless his little cotton socks.  Most of the time I find human beings so disappointing to be around I yearn to live in a wooden hut in the middle of nowhere and avoid them as much as possible, but every now and again I’m reminded there are still selfless, thoughtful and caring people in the world and it restores my faith in humanity.

I won’t say much about the Paris attacks yesterday other than I really hope there’s life after death and the evil bastards who carried out the atrocities are currently facing their Maker in whose name these acts are carried out.  If God exists there’s only one to which we all pray and I’d like to bet he/she is weeping along with the rest of us.



Rheumatology appointment

This morning I had my appointment with the Consultant Rheumatologist about my Ehlers-Danlos and I’d only had to wait 3 weeks from referral which is virtually unheard of :-)  I haven’t seen a Consultant about my EDS since my diagnosis in 2010, despite the fact my condition has markedly deteriorated in that time.  I was originally diagnosed by Dr Paulene Ho in Manchester as she runs a hypermobility clinic but it’s 100 miles away and I’ve since learned that the Rheumy at my local hospital in Cumbria does recognize EDS so obviously I opted to see him this week.

He was very nice which is half the battle IMHO.  I’ve lost count over the years of the Consultants I’ve seen who are arrogant, don’t listen, have decided what’s wrong with you before you walk in the door then try to shove you out again 15 seconds later, so to see a Doctor who listens and asks all the relevant questions is always a relief.  He didn’t bat an eyelid when I said I had Mast Cell Disease and seemed to know it is now thought to be linked to EDS in some patients :-)

My main concern is my hips, in particular my right hip.  I’d never had any hip problems before April 2014 when they suddenly started killing me to the point where I couldn’t sit, stand or lie and the pain kept me awake at nights.  I was diagnosed by my GP has having Greater Trochanteric Bursitis (not sure how as no x-rays or anything were taken, maybe she’s psychic) and passed on to physio who prescribed total rest.  I then spent the next 9 months on crutches.  The hip pain did settle down but I’ve been left with vastly reduced range of movement, stiffness and pain on rotation.  I’ve put up with all that for over a year hoping it would sort itself out but it hasn’t, so I decided I should see someone about it.

The Rheumy confirmed the range of movement in my right hip is pretty dire.  Only about 30% outer flexation and 5% inner flexation, as against 70% outer flexation and 40% inner flexation in my left hip (which still isn’t normal either) :-(  So he sent me off to x-ray, which took nearly an hour because it was lunch time.  The x-ray thankfully showed nothing untoward bone-wise so he’s referred me for an MRI scan to see if there are any ligament tears – I’ll just have to wait for an appointment.  I’ve had so many x-rays and scans over the past 40 years it’s a wonder I don’t glow in the fucking dark ;-)  He doesn’t think I ever had bursitis (which I suspected anyway) as this doesn’t tend to affect range of movement to any great extent.

To be honest I don’t think there’s anything wrong with my hips at all.  When I was on crutches last year both hips hurt like a son-of-a-bitch and I wouldn’t have torn both ligaments at the same time, just like I wouldn’t have developed bursitis in both hips at the same time.  I think the issue is with my back and has been for years – Doctors seem reluctant to tackle back problems though as they’re notoriously complicated!  The Rheumy today did concede though that if the MRI came back normal he’d have to look further afield to find the primary issue.

I had all sorts of questions to ask him but all he wanted to concentrate on was my hips, which I understand given the stupidly limited amount of time you get to spend with Consultants (I did remarkably well today and saw him for 20 whole minutes!).  The lump on my finger mentioned in this post is still sore as all hell but he couldn’t care less so I might make an appt with the nurse at my local health centre and ask her what I can do to sort it.

So, I’m now waiting for a scan, my moulded insoles and to find out what’s going on with my deformed knuckle.  I’ll keep you posted on all three, whether you want me to or not ;-)


Deja Vu

I was diagnosed with ME in January of 1994.  In October 1996 the Royal College published a report on ME in the UK, the first ever official report into the condition here.  Sufferers were excited to finally have their illness recognized after years of being totally ignored by the medical profession and were hopeful the report would help doctors effectively manage the condition.  Sadly it wasn’t to be.

The Report changed the landscape of ME for the worse and we’re still living with the consequences two decades on.  Some of the report’s findings are listed below:

  • The disease name was changed from ME to CFS because “The term ME…….. may mislead patients into believing they have a serious and specific pathological process affecting their muscles and brain”.
  • The conclusion that “primary care or community cases of CFS fulfil criteria for common psychological disorders”, although the authors did conclude that “a proportion (25-40%) do not”.  This did not stop every doctor in the UK concluding that all ME patients were mentally, not physically, ill.
  • “At present there is no convincing evidence that common viral infections are a risk factor for CFS” despite the diagnostic criteria at the time needing an acute viral onset to be present before ME could be either suspected or confirmed.  So the diagnostic criteria were revised and you no longer needed a viral onset, which of course then meant that people were diagnosed with ME who didn’t actually have ME which has tainted research into the disease ever since.
  • “The depression which is found in half of patients cannot simply be regarded as secondary to the disability and uncertainty associated with CFS”, in other words depression is at the root of ME, not a by-product of having to live with such a devastating disease.
  • “The number of psychiatric symptoms increases with the number of somatic (bodily) symptoms” which was interpreted to mean that the more sick you are the more deluded and mentally ill you are, not that the more physically ill you are and the less life you are able to lead the more likely you are to be sad about it.
  • “Structural and functioning neuroimaging and neuro-endocrinological investigations have not led to consistent abnormalities being demonstrated in CFS……..this may also be due to such confounding factors as sleep disturbance and prolonged inactivity.  Current findings in relation to muscle dysfunction and immune abnormalities are open to several interpretations. There is no compelling evidence for a substantial primary role of neuromuscular dysfunction.”  In other words, we are ill because we rest too much, not because there is actually anything physically wrong with us.
  • “Reports of cognitive abnormalities are similarly inconsistent.”
  • “Gradual, planned, mutually agreed and monitored increase in exercise forms the cornerstone of treatment” even though in every ME Charity patient survey ever conducted the number one thing which made sufferers worse was exercise.

Ever since this report came out we have been fighting the stigma attached to this disease and the idea that there is no evidence we are physically ill and all we need to get better is some CBT to deal with our fear of exercise.

I woke yesterday morning to find that in 2015, nineteen years after the Royal College’s Report into ME, there has been a large research study (the PACE trial) which concludes basically the same thing.  I can’t even describe my feelings as I read the Telegraph article knowing what the fall-out is going to be and the devastating impact this will have on patients.  Again.  The fact that the PACE trial is fundamentally flawed in just about every way is irrelevant and the fact that there have been some excellent rebuttal letters written outlining said flaws is also irrelevant because they won’t grab the headlines – all anyone will remember is that ME can be cured by positive thinking and a bit of exercise and patients will have to live with the legacy of that…….I just hope it’s not for another two decades.

I can’t dwell on this research or its consequences – if I did I would want to slit my wrists.  I never see doctors about my ME and haven’t done for years because it’s totally pointless.  Thankfully (?!) for me I also have Ehlers-Danlos and put this on forms for welfare benefits because to put ME has proved the death knell in the past for me to obtain any financial assistance.  I’ve tried to get researchers interested in my mast cell theory for ME and failed.  I’ve tried in the past to be included in research but always told because I can’t take drugs that I can’t take part, despite nearly all of my severely affected ME friends being unable to take drugs too – why don’t researchers look into that little nugget, instead of dismissing it?  The ME/CFS research team in Newcastle are the first in the country to actually be recruiting severely affected patients into one of their current research trials, only I’m excluded because I’m no longer severely affected.  I would have thought it would be very beneficial to look at one of the only adults in the country to have been bedridden for nearly 10 years then to have made a good degree of recovery but what do I know?  I’ve also been waiting and waiting and waiting for my invitation to be included in the ME Association’s national biobank and heard nothing.  As a former member of the CHROME database I was supposed to be amongst the first sufferers to donate blood to the bank and am incredibly disappointed it all seems to have ground to a halt.

We need a diagnostic test for ME.  We needed it twenty years ago and I can’t for the life of me understand why researchers have made zero headway into the cause of ME and consequently a diagnostic test of some description.  And, yes, I do know about all the research which has shown various abnormalities in ME but there is no diagnostic test much as we all wish it were different.  No study has consistently found a reliable marker in all ME patients, although I suspect if the severely affected had been included in research during the last 20 years instead of excluded researchers would have fared better.

Excluding severely affected ME patients in research is like studying heart disease and only including people with angina while excluding anyone needing a bypass.  Oh, and including people with symptoms which appear to be heart related but turn out to be reflux or anxiety and nothing to do with the heart at all!  The current research situation is a sodding mess and is unfortunately going to get us precisely nowhere.

ME Action has launched a petition to retract the conclusions of the PACE research trial which I’ve signed.  It won’t do any good because you need over 100,000 signatures in order for it to even be noticed by Government but at least I feel I’ve done something.  And now I need to let the whole thing go because I’m too sick and tired to do anything else.




Weekly roundup

Which should actually be called fortnightly roundup being as though I didn’t get round to doing a post last weekend ;-)

The past 2 weeks my energy has been remarkably good.  Really.  It’s been gorgeous to actually be able to do things and not feel like I’ve been hit by an express train.  It hasn’t lasted, because my period is due any second, but boy did I make the most of it while it was there.

The weather has been fabulous for Autumn so I’ve abandoned any jobs which needed doing in the house and have been pottering around with Bert and my camera most afternoons.  My Dad and I went to a local beauty spot I hadn’t visited before as it’s a half hour drive away and he walked Bertie for 2 hours while I sat and took photos which was lovely.  Autumn is probably my favourite time of year and you can’t beat the spectacular skies we often see here in the North of England.

Of course, all this walking around has played absolute bloody havoc with my knees and hips and I’ve spent the last 3 days on crutches and with both knee supports on, but what’s a little burning pain and stiffness between friends? ;-)

Last Saturday night my Uncle and Aunt were over from Australia for a week, so Mum arranged a family get together which I was able to attend.  Mum and I left at 9.30pm but at least I got there and showed a face.

The highlight of last week was that I won our first Camera Club competition of the year with my Buzzard photo (shown in my last roundup post).   I was tickled pink :-)

It’s been 2 months since my Podiatrist referred me to Orthotics to have some moulded insoles made and I’d heard diddly squat, so I chased the appointment up.  They simply have a massive  backlog and will get to me when they can.  Fairy nuff.

As you all know, I’m not really the gushy type and live surrounded by farmers.  Much as I like some of Liz Gilbert’s posts all this “my dearest darling one” and the current fad to call people “hun” and “lovely” irritates the life out of me, bearing in mind we don’t know each other.  I’m British, it’s just too………..forward.  I’m also not one to count my blessings.  Yes, I have them and I’m aware of them but I also deal with ten tons of shite on a daily basis.  I am not delighted with all the lessons being ill for decades has taught me – I’d rather have been well and in blissful ignorance.  There was a picture doing the rounds on Facebook this week which I thought was hilarious and sums up how I feel about all the inspirational be-happy-through-adversity bollocks which plops into my news feed with monotonous regularity:

I’m aware I have put zero recipes up on the site in recent months for which I apologise.  I do have a lunch and dinner one ready, but just need to make them both and do some photos before I gobble them up, which is easier said than done when you’re starving hungry ;-)  I promise to try harder.