MCAD Book Review

There are only a handful of books written on the subject of Mast Cell Disease, and the majority of those are written by Doctors.  What a joy, therefore, to come across a book written by a sufferer which is easy to read and extremely relatable.  I’ve no idea now how I found it but I’m very glad I did and read the entire thing from cover to cover in just 3 days as I simply couldn’t put it down!

‘My Crazy Life: A Humorous Guide to Understanding Mast Cell Disorders’ by Pamela Hodge tells the story of a middle-aged woman who suddenly becomes allergic to life.  She loses her job, can’t leave the house without reacting and at one stage even has to live in her barn as something in her home was causing daily anaphylaxis.  Foods, chemicals, smells, even her husband’s sperm cause mast cell degranulation and I truly empathized with her struggle in trying to find out the cause of the catastrophic symptoms which plagued her every waking moment.

She’s diagnosed with several disorders such as Fibromyalgia, Chronic Fatigue Syndrome and even Lupus, before eventually finding a Doctor who knows about mast cells.  Some Doctors are scarily dismissive and put her symptoms down to “anxiety” (we’ve all been there!) and eventually even her closest friend turned on her and basically told her she was exaggerating and didn’t know what being truly sick was :-(   Thankfully her husband has been her rock and even writes a small chapter from a partner’s perspective.

Each Chapter is headed by a quote, many of which I could really relate to, and the book has lots of links to further information.  Pam discovered that, not only was she histamine sensitive she was also salicylate sensitive, so includes information on low salicylate foods and products.

Having lost 2 close friends in the past year, I found the Chapter on Friendship very moving and the anger Pam still feels over losing her best friend, and another very close friend, through just getting sick is evident.  Her husband was friends with these women’s husbands, so he too has lost friendships due to his wife’s illness.

Here are some quotes which particularly stood out for me in the book:

“The bravest thing I have ever done was continuing my life when I wanted to die”

“….she told me that there are going to be cases where nothing is going to cause it.  The mast cells are just going to get angry and react.  I know intellectually this can happen, but on an emotional level this is hard stuff to accept.  This is admitting that, in a lot of circumstances, I have no control.”

“As big as my battle with a mast cell disorder has been, my battle with the medical profession trying to fit me into what they know, has been just as big” Daryl Neal.

“I was on Zyrtec for several months and became allergic to it.  I don’t even know how this happens, but it does”  (my note:  this is my biggest fear.  It wouldn’t be too big an issue if I became allergic to my H1, but if I became allergic to my H2 I have no clue how I’d live.  The pain of severe reflux is like nothing on earth and without the drugs to control it I would seriously consider ending my life).
“Loneliness is never more cruel than when it is felt in close propinquity with someone who has ceased to communicate” Germaine Greer.

I highly recommend this book to anyone struggling with a mast cell disease, if for no other reason than it’s always wonderful to know that you’re not alone.   Available on kindle download from Amazon.

Genes

I’ve touched very briefly on the hereditary factor of the diseases from which I suffer in this blog post, but for new followers I thought I’d go over the subject in more depth.  I don’t have any technical knowledge of genes – it’s something I keep promising myself I’ll read up on but it’s a very complex subject and I never seem to have the time or the energy – and to be honest it’s kind’ve irrelevant unless you’re planning, or already have, a family (I’m thankfully wayyyy past that stage in my life), but it’s still an important subject as genes hold the key to both cause and cure.

My Mom is one of 7 children, who all now have children, grand-children and in some cases great-grandchildren, so I have a large population to study in terms of my own genetic make-up.  My biological Dad, on the other hand, only has one sibling and my paternal family haven’t spoken to me since 1989, so it’s almost impossible to discover any paternal genetic markers.  I have one biological brother, who had no children of his own, and one paternal cousin who has 3 children (whose Mom thankfully looked me up on Facebook, so at least I’m in touch with her and can ask questions about the kids), so this information pool is very small.  Despite quite a large extended maternal family I haven’t found a single person who shares my disease traits, so I’m either a freak or I’m the post-mans ;-) .  I don’t wish illness on any of my family members obviously, but it’s incredibly frustrating to be the only one of 60 people who closely share my genes that’s sick in this way.

M.E.

Researchers are no further forward in unravelling the mystery of M.E. today than they were when I developed the disease back in 1994.  There is usually some kind of immune event, such as a virus or vaccination, involved but not everyone who catches a cold goes on to develop M.E..  Researchers guess that there is, therefore, some kind of pre-disposing factor which makes one person develop the disease and not another, and the most likely pre-disposing factor is genetics.

It’s no coincidence to me that people with Ehlers-Danlos are more prone to also having M.E..  As I state in my Canary post, and the follow-up Q&A, I believe mast cells are implicated in M.E. and of course people with EDS are more prone to developing mast cell diseases than the healthy population.  M.E. absolutely can run in families and I personally know of siblings who both have the disease, and parent/child who both have the disease.

Ehlers-Danlos Syndrome

EDS is a genetic disorder of collagen and there is a 50% chance a person with the illness will pass it on to their children.  I have a sneaking suspicion that both my parents are hypermobile, but that my Mom is the one from whom I’ve inherited EDS and my Dad is just bendy (though it’s hard to gauge as I’m not in touch with my Dad so can’t talk to him about his health).

The following traits in my Mom are the reason I think she has EDS:

  • Good at gymnastics as a child, ie very flexible.
  • Rubbish at sports.  I’m fairly sure her proprioception is off so she’s hopeless at things like catching or hitting a ball.
  • It’s impossible to gauge now if her joints are hypermobile, as she is very arthritic, but her thumbs still bend outwards at 45 degree angles like mine.
  • She has Pectus Carinatum (ie a ‘pigeon chest’) which is associated with EDS and Marfans Syndrome.
  • She has fine, translucent skin.
  • She bruises easily.
  • She has many signs of Mast Cell Disease (more on this later).
  • She had a collapsed lung in her mid forties for no apparent reason (a sign associated with EDS and Marfans Syndrome).
  • She has migraine with aura.
  • She lost all her teeth in her early 50s due to receding gums.
  • She had early onset osteoporosis (though this is common in my extended family, so we obviously have the osteoporosis gene and it may not be connected to EDS).
  • Very long standing GERD (ie. reflux).
  • Chronic nausea.
  • Motion sickness.
  • Local anaesthetics don’t work at all.  Neither does light sedation, eg. valium.
  • Severe stretch marks after pregnancy.
  • Frequent nose bleeds.
  • Narrow ear and nose canals.
  • Dupuytren’s Contracture – this isn’t as yet linked to EDS, but it’s another genetic connective tissue disorder and I’ve come across other people with EDS who also have DC in the family!

As far as my Mom is concerned the list of EDS suspects is quite long.  However, she’s never suffered from sprains or strains, has never had a partial or full dislocation, no prolapses, no chronic fatigue and apart from her osteoporosis no pain, so if she does have EDS it’s to a lesser degree than me (for which I’m truly grateful).

My Mom asked my biological brother if he had any signs of EDS and he said no.  I disagree.

  • As a child he used to frequently ‘pop’ his knuckles.
  • He is flat footed.
  • He has a marfans body type (very tall with long arms).
  • He had childhood “allergies” which he outgrew but I wonder now if they were mast cell related.
  • He had “growing pains”.
  • He was an exceptionally talented footballer, but due to knee problems had to give up the sport in early adulthood.
  • He has a high mouth roof arch and dental overcrowding.
  • He told our Mom he isn’t in any way hypermobile: in fact he’s as stiff as a board at only 49 years old (not everyone with EDS is bendy and early osteoarthritis is common).
  • At some stage in his adult life he had a period of chronic fatigue so severe he had to go back to live with our Dad.  Thankfully he fully recovered.
  • He’s had crinkly, loose skin from child-hood (I’d love the opportunity to pull it to see how stretchy it is).
My brother as a young teenager - very loose facial skin (apologies for very poor picture quality!)

My brother as a young teenager – very loose facial skin (apologies for poor picture quality!)

As I’ve stated before in my blog, I wonder if we have cross-over types of EDS in my family.  It may be that my brother might have Classical EDS or even Marfans but I’ve inherited hypermobility from our Dad, which has given me H-EDS?

When I discovered I had EDS I emailed all my maternal cousins and asked if any of them, or their children, showed any signs.  None did, apart from one cousin who was at that time having a problem with a ‘clicking’ hip.  She went to see a Rheumatologist, who said she was hypermobile but didn’t have EDS as she had no other signs.  When I was her age (36) I didn’t have any other classic signs either, so I’m just waiting to see if she deteriorates in her forties as I did.  One of my cousins was a professional ballet dancer for some years but she said she has no problems at all despite being in her mid fifties, so is clearly hypermobile but shows no signs of EDS.  It does seem weird to me that in a family as large as ours no-one else seems to have any of the problems usually associated with EDS.  Having said all that, the only sibling my Mom resembles is her younger brother – she looks nothing like any of the others so maybe the gene has skipped a generation or has come from an Aunt or Uncle?

Mast Cell Disease

Looking back, I know I’ve had MCAD from birth.  My Mom also has many MCAD symptoms which suggests there’s some kind of genetic link involved.  She has:

  • Multiple drug allergies, including hormones, certain antibiotics, certain anti-depressants, morphine, general anaesthesia.
  • Flushing after alcohol or strong emotions.
  • Itching skin and scalp.  Allergy to sticking plasters.
  • Sneezes constantly but no obvious allergies (she’s been on daily antihistamines for over 20 years).
  • Dry eyes.
  • Chronic reflux (she’s been on a PPI for over 20 years).
  • Chronic intermittent diarrhea for which no explanation can be found.
  • Migraine.
  • Pressure hives and oedema (ie swelling).
  • Chronic low level depression.
  • Chronic nausea.
  • Gall bladder problems (she had hers removed over 20 years ago – it was so shrivelled and diseased they couldn’t even find it on the scan!  MCAD can affect organs like the gall bladder, pancreas and kidneys).
  • She’s always ill when travelling abroad, due to changes in climate, food and water.
  • Can’t bear strong sunshine.

Thankfully she’s never had issues with foods and her mast cell symptoms don’t seem to’ve escalated to anaphalactoid reactions like mine have, but I do remember that when she went through menopause she had huge problems with swelling, whealing and hives for several years.  She was on HRT for her osteoporosis following menopause and lived with huge itchy swollen welts all over her body for 2 years!  Her va-j-j also swelled so badly at times she couldn’t put her legs together (why on earth she put up with these symptoms and didn’t just come off the damned patches is anyone’s guess).

My Mom’s sister I also think had mast cell disease, though her symptoms took a very different form.  She had severe depression and anxiety her whole adult life, to the point where she even tried ECT (electric shock therapy) which of course didn’t help.  There was absolutely no reason for her depression and I think it was caused by MCAD.  Her daughter also has depression and anxiety, and regularly wakes in the middle of the night with her heart pounding and her adrenaline pumping (sound familiar?).  Her older sister has a severe migraine disorder which has proved absolutely resistant to drug treatment.  I’ve tried to persuade this sister to try a low histamine diet (her current diet is a histamine time bomb) but she’s actually a chef and “loves her food” too much to give it up.  She must love her migraines too then, because I’m convinced a low histamine diet would help no end!  Neither my Aunt or her daughters had any signs of Ehlers-Danlos, so I’m not sure why they’d have mast cell disease, but I’m convinced they do.

It’s easy to see now that my Mom and I share a disease history, but it’s only with the benefit of hindsight that it’s become so obvious.  There are also glimpses of hypermobility in my ballet dancing cousin and my other cousin’s sub-luxing hip, and possible mast cell issues in my Aunt and both her daughters.   I hope by sharing this post you can look for signs in your own family members, particularly children, as early intervention helps with prognosis.

 

 

Mobility Scooter Review

I love to go out with my dog and to take photographs but my current hip pain is making any kind of walking impossible.  I do have a small mobility scooter, which dismantles to go in the boot of my car and which I’ve used extensively over the past few years, but it’s only designed for pavements or indoor surfaces.  I live in a very rural area and am surrounded by farmland, dirt tracks and woods, which are wet, muddy, boulder strewn, pot-holed and rough and it’s made me really sad over the past few months to have to stick to the roads with Bertie on his lead and not be able to go to our favourite haunts where I can watch the wildlife and Bert can run free.

A few weeks ago I rang my local mobility centre and asked if they had any all-terrain mobility scooters for sale.  I can’t afford new but they often sell second/third-hand and luckily for me they had in a Drive Sport Rider.  It’s not technically an all-terrain scooter like, for example a TGA Sport or a Tramper, but it does have very large wheels, rear wheel drive, all round suspension and a very large motor so it theoretically should tackle some pretty rough ground.

Even second-hand, all terrain scooters are really expensive – new they cost anything upwards from £3,500 ($5,480) and going as far as £20,000 ($31,300) for a caterpillar – so it was a huge financial decision for me.  For that reason I asked if I could hire the scooter for a week to try it out before committing to buy, and luckily for me the man said yes (although charged me £100 for the privilege :-/ ).

The Sport Rider is not your average doddery old foggies scooter.  Oh no.  The design was based on the Harley Davidson motorcycle and it definitely has the look of a mortorbike trike, being 3 wheeled and with a distinctive mortorcycle-style front chassis.  It has adjustable wing mirrors, rear lights, head light, front and rear indicators and a basic trip computer which tells you battery life, speed, miles driven and the time.  It also has a swivel seat, which can be pushed forward or back depending how long your legs are, adjustable armrests for height and width, and the backrest can also be angled.  It has an indoor (3mph) setting and an outdoor (8mph) setting and can zip along at a decent pace on the road.

Apart from the indicators, all the other controls are on the right handlebar (the handlebar is also adjustable and I’ve had to tilt it down somewhat to be able to reach!).  You drive by pushing a lever forwards and if you let go it automatically stops.  The scooter does, however, have an additional manual emergency brake on the left handlebar.

When driving along smooth surfaces it’s a seriously comfy ride.  I did, however, put it through its paces along some rough terrain.  It was bumpy, and you do need some upper body strength to keep the steering and throttle going, but I’m only tiny and quite weak and coped without any problems.  It took a bit of getting used to the fact that it’s a three, and not a four, wheeler and at times I did wonder how far I could tilt it without it falling over, but actually it’s incredibly sturdy (it weighs a ton) and due to the three wheels it turns on a dime.

I drove it over a bog, up a rain soaked field, a muddy rock strewn farm track and through water (not recommended as you shouldn’t get it wet!) and it took everything in its stride.  Needless to say I’ve decided to keep it :-) .

The salesman from the mobility centre needs a good slap though.  One of the most important considerations when buying a second hand scooter is how old the batteries are.  They only last about 18 months in any event, and can be seriously expensive to replace.  So I asked the salesman twice how old the batteries were and he replied “about 6 months”.  Lying little slimeball.  I took the seat off and removed the battery cover to check and the ticket inside said they were installed in September 2012 – over 2 years ago.  Instead of doing the 30 miles on one charge they were supposed to I was lucky to get 6 miles!  The scooter uses 2 batteries, and to replace they cost around £300 ($470)!!  How can this man sleep at night knowing he’s ripping off elderly and disabled people? :-( .

So at the end of the hire week I rang the salesman to discuss the scooter.  I thought about it hard before hand and worded the conversation so that he was left in no doubt I knew that lying about a product breaches the Sale of Goods Act.  This resulted in him knocking the £100 hire charge off the purchase price and him fitting brand new £300 batteries.  Result!

I’m now looking at pannier bags for my bits and bobs (mainly my camera plus Bertie’s lead, treats and poop bags), an all weather cover (dogs still need to be walked in the rain sadly) and some kind of dog carrier so that Bertie can be safely strapped in that until we get where we’re going (you can get a proper pannier box which fits on the back but it’s not suitable for a mutt).

Class 3 scooters need to be declared to the DVLA though this is free of charge.  Insurance isn’t compulsory, but it’s best to be covered for theft and personal liability in case of accident.  I’m also going to need breakdown cover, because if this baby conks on me in the middle of a muddy field it’s not like I can push it home!

I can’t wait for next summer.  The scooter will do up to 30 miles on a single charge, so Bertie and I could tramp all over for hours without walking a single step :-)

Weekly roundup

I was going to write this post yesterday, being the end of the week, but I had a migraine.  An all-over-my-noggin-not-just-on-one-side migraine, that made me nauseous and want to chop my head off just to get rid of the pain.  It’s day 17 of my menstrual cycle.  Again.  What is it about day 17 that gives me a migraine?!  If I work out the figures I ovulate around day 12-14, so why I should have a hormone derived head explosion on day 17 is a mystery.  Please menopause, hurry yourself along so I don’t have to deal with this shit every month!

My hip pain has been slightly better this week, yayyy :-) .  I’ve been trialling an all terrain mobility scooter (more on this in a future blog post), and received my smart crutches (more on this to come too) so I’ve barely walked a step and it has helped.  I see my physio again tomorrow but to be fair I can’t spend my whole life sitting on my lardy arse, so I’m not sure what the solution is going to be.  Watch this space.

My mast cells remain twitchy and I’m still sleeping badly.  After nearly 3 months the insomnia is now making me grumpy (yes, it is possible for me to be even grumpier than normal – hard to believe I know ;-) ).  I’m having some slight reactions after random foods but so far they’re not out of hand (thank you God!).  I’m trying to be really strict with my diet, but I’m so exhausted, feel so nauseous and it hurts so much to stand to make meals, that I confess it’s a struggle.  Last night I ended up with a bowl of Cornflakes and some tortilla chips dipped in mango chutney for dinner.  It’s all I wanted so just for once I indulged in crap.  It was delicious ;-)

The big news of last week in our family is that we’ve finally got my Nan into residential care.  She’s 100 years old, can’t walk unaided, is doubly incontinent, partially deaf, partially sighted, diabetic and going ever so slightly doolally.  She currently lives in sheltered housing with the help of my Dad and paid carers, but the last 2 years have been really hard and we’ve agreed as a family that she needs more care than we can currently provide.

We asked her Social Worker to assess her for residential care, thinking she’d sail through, and were absolutely gobsmacked last Tuesday when she was turned down as she “didn’t fit the criteria”.  The only way she could get any worse is to be dead, so I rang the Social Worker for a little chat.  I pointed out that my Nan, who weighs 20 stones (280lbs), falls so regularly that the ambulance service know her by name.  That she has continence accidents which include smearing excrement all over herself, the bed, the walls and the carpets (we have no idea how she manages this!) which my 75 year old Dad has to clean up, sometimes at midnight.  She thinks all the Carers are stealing from her, and last month accused them of taking her Dentures which we eventually found under the bed (Lord knows how she got them there!).  And to cap it all off, we found she’s been hiding all her medication in a Tic Tac box and not actually taking it, putting her at risk of a diabetic coma.  The Social Worker decided to change her mind and we now have a bed for her in a lovely home not far from my parents.  Result.

Life doesn’t stop just because you’re chronically sick.  You still have to deal with all the milestone events that healthy people deal with, you just have to do it whilst also dealing with your own problems.  It’s stressful.

It’s my second Camera Club competition this week and there is a set theme of flowers.  Here are my 2 entries:

Judging takes place in December.  Wish me luck!

Photography

I mentioned in a previous blog post that I have exciting news.  Well it’s exciting to me and no-one else but I thought I’d share anyway ;-)

As regular readers of my blog know I have a passion for photography.  I started taking photos when I adopted my Mini Schnauzer Bertie in 2011.  Hadn’t the foggiest clue what I was doing (still don’t!) but I love it.

In September I decided to join my local Camera Club to see if I could improve my skills.  The Club holds regular in-house competitions which are judged by an outsider from another Camera Club.  Your pictures are critiqued in front of everyone, which is mortifying, but the point is that you learn not only from your own mistakes but from everyone else’s.  It’s also nice to get inspiration from other people’s pictures, particularly the Advanced class who’ve been taking photos for donkeys years.

I entered my first competition this week with a photo of some Honesty seeds and the judging was last night.  The result………fanfare please………is that I was awarded 2nd place!  Can’t believe it for my very first photo entry and I’m thrilled to bits :-)

Honesty

My second piece of exciting news is that many of my photos are now available for sale!  Some of my friends asked if they could buy my pictures as cards, prints or posters so I’ve placed them online.  I only make measly pennies on each one, but I’m not in it for the money – I just love taking photos of wildlife, my gorgeous dog and the stunning area around where I live, and it’s a bit pointless taking pictures unless you share them.

My UK shop is at http://www.photoboxgallery.com/jaks where you can buy prints, posters, mousemats, jigsaws, fridge magnets, stickers, coasters and cushions but sadly not greetings cards (Photobox stupidly don’t offer them for sale).  If anyone sees a photo they like but would love, for example, a canvas or foam board print, please email me through the site and I can provide a price.

My international shop, available in most countries including the UK, is at http://www.redbubble.com/people/jaks/shop where you can buy cards, prints, posters, mugs, t-shirts, cushions, duvets, mobile phone skins, tablet skins and laptop skins (note: not all photos available in all products).  Just click on the picture you like from the gallery, and available products will be shown if you scroll down the page.

If buying greetings cards from Redbubble from the UK there is unfortunately up to a 2 week delivery time as they are printed in the States, though the time should be quicker for posters as they are printed in the UK if ordered in the UK (printed in the States if ordered from the States).  Unfortunately I can’t provide postage and packaging costs as it depends on your country of origin, so this is calculated at checkout.

I’m just an amateur, so don’t expect the Mona Lisa, but I hope you enjoy looking through the photos as much as I enjoyed taking them :-) .

Helpful equipment

This is just a quick post to tell you about 2 pieces of equipment I’ve bought recently that are super useful.

The first is a remote control plug adapter.  I spend a lot of time in bed, and behind my bedside cabinet is a trailing socket extension containing plugs for my laptop, ipod, mobile phone and laptop hard drive.  I don’t have these turned on constantly as it’s a waste of expensive electric, but I’m now at the stage where having to bend down the back of my bedside cabinet to turn each plug on individually every day is beyond me.

Hurrahh for the Energenie trailing socket extension lead with 4 sockets which can be individually turned on and off by remote control (they also do individual socket remotes).  It’s inexpensive (£22), has surge protection and works through walls and furniture.  I will be buying several more for around the house so that I can turn appliances on and off from the comfort of my bed!

The second piece of equipment isn’t for me (yet!), it’s for my Mum but it’s so brilliant I just had to share.  My Mum, like my Nan before her, has a familial hand tremor.  It’s now so bad she can’t write her own name and watching her eat things like soup or cereal is pitiful.

While waiting for my Dad to have his hernia surgery recently she was reading a magazine and saw an advert for a spoon which claimed to cancel out hand tremors.  It was really expensive, and only available from America, but she asked me to send for it (and it amazingly arrived 3 days later!).

It is excellent.  It has a thick handle which contains a motor and the spoon (they also do a fork) slots onto the end.  The motor makes the spoon wobble, which cancels out any movement made by the shaking hand.  Here’s someone with a tremor (no, it’s not my Mom!) using the spoon:

After use, the spoon and fork parts are dishwasher safe and the handle pops onto a charger.  My Mum now eats anything and everything with relative ease and says it will revolutionize eating out which used to be really embarrassing.  It doesn’t completely stop the tremor but it sure helps and at least she’s no longer spilling everything down her jumper!

Weekly roundup

It’s been a bit of a tough week.  I’ve been icing my hip twice a day, rubbing in lashings of Ibulieve gel and doing zero exercise………but my hips have actually gotten worse not better.  I’m gutted.  I’m now in constant pain and can’t find a single position in bed which is comfortable.  Consequently I’m sleeping even worse than I was already, which means I’m not just tired I’m exhausted and now my ME is playing up so today I am confined to bed.

The NHS gutter crutches are simply unusable.  They are so heavy and cumbersome I feel like I’ve spent an hour weight-lifting in the gym every time I use them.  So I’ve bitten the bullet and ordered some Smart Crutches (in black, so they go with every outfit ;-) ) and am just waiting for them to arrive.

The physio wanted me to do some hydrotherapy but it involves a 60 mile round trip which isn’t physically do-able every week in winter for the next god knows how many months.  With my dodgy immune system I’m also not keen on using a hospital pool!  My neighbour has some mild back issues and also fancies swimming but doesn’t fancy a snot, pee & germ infected public pool so this weekend we’ve been investigating hiring a private heated indoor pool and having ourselves a swim session pour deux.  We’ve managed to find one locally which rents out at £20 ($31) an hour, so we’re hoping to try that next week.  The last time I tried swimming it made me feel really MEish and fluey, but I admit it’s been 18 years so things might have changed!  I’ll give it a go and see how I get on (obviously starting with just a few laps and working up).

Both my Mum and my dog are also ill (Mum is coughing up blood again and Bertie is lame) so we’re all a bit miserable.

I’ve been investigating upgrading my current little mobility scooter to one that will go over much rougher terrain.  There’s a 2nd hand one going at my local Disability centre and, while it’s still outrageously expensive at £1,000 ($1,600) and would decimate my meagre savings it’s really cheap compared to a new one (cost £3,000+ or $4,800).  It would mean I could take Bertie out off-lead, and do my photography, on my usual public footpaths through woods and fields rather than being confined to the road with Bert on the lead as I currently am.  It’s a huge decision for me financially and I’m still undecided as to what to do.  One of the biggest things putting me off is that the scooter is only shower, not water, proof.  It’s bloody ridiculous.  Are disabled people not supposed to go out when it’s wet (where I live it rains 300 days out of every 365!)?  I don’t understand why the console on a scooter can’t be made waterproof like the console on a motorbike (this particular scooter was designed with the Harley Davidson motorbike in mind).  With my current scooter I either wear a large waterproof cape draped over me and the scooter (which makes picking up dog poop a total pain in the backside and one of these days when it’s windy I’m going to take off like Mary Poppins) or I place a bin liner over the console to keep it dry, but the way the Sport Rider is designed placing a bag over the handlebars would be a nightmare.  I’m ringing the mobility place again today for another chat.

Mast cell-wise my large outbreak of butt hives are finally on the wane, but I had a mast cell reaction last night at about 9.30pm for no reason I could fathom (increased blood pressure and heart rate, anxiety, muscle spasms, nausea, buzzy nerves, brain freeze – the usual suspects).  It could have been a late reaction to my dinner (eaten 2 hours earlier) or my H2 tablet (taken 90 minutes earlier), the fact I’m ovulating or it could be something else entirely.  I’m obviously still quite mast cell-y though and have been for about 2 months now (ever since my hip issue started).

And to top off an other-wise crappy week, last night was the last episode in the current series of Downton Abbey *sob* ;-) .

Despite spending this entire post whinging, life is not all doom and gloom.  I do have some exciting news but will save it for later in the week!