Tag Archives: Mast Cell Activation Disorder

Hellooo, what about me?

My parents and I were chatting yesterday.  Mum had seen an item on the TV about Sepsis and talked about the fact that her Sister died of that while having treatment for cancer.  I said to Mum “you realize that in Meningitis it’s the sepsis that kills you not so much the Meningitis?” and Mum said she hadn’t realized that.  So she turns to my Dad and says “your sister had Meningitis, it’s lucky she didn’t get Sepsis” and I sat there with my gob open.  Er, your daughter had Meningitis, nearly died and is sitting right here FFS!

My Mum is a very compassionate person and has a lot of empathy for other people’s suffering – just not mine.  Her other sister battled cancer for 2 years and my Mum frequently tells me “I’ve never seen anyone as ill as she was, she suffered terribly” and I sit there internally shaking my head.  My Aunt was 78 years old, had had a full life, had a loving husband, 3 wonderful, supportive, caring children, a GP who used to visit her weekly at home, the Council paid for her bathroom to be turned into a wet room even though she was fucking loaded, she had a specialist cancer nurse and Consultant, went to a weekly cancer support group and in the end was visited by MacMillan 24/7.  I’m not denying having cancer is rough but she had exemplary care and support.  After my Meningitis I was bedridden for a decade.  I suffered every second of every day of every year.  I was only 26, lived alone, doctors refused to visit me at home even though I was too sick to get to the surgery, I had very little symptom relief, never saw a consultant, was denied welfare benefits to pay for my own care, was denied care from social services and ignored by every-fucking-one.  I had daily seizures, frightening anaphylaxis for which I received no treatment, paralysis, spent periods unable to talk, walk, eat or even remain conscious and was told twice I might die.  But my Mum never mentions it.  Never.

It’s not like she denies that I’m sick and if something about M.E. appears on the telly or in the newspaper she will ring and tell me, it’s more that she just ignores my suffering.  I’ve been diagnosed with EDS for 8 years now and she still refuses to remember the name of the disease like it’s just too hard to remember three simple letters – she calls it “that thing that you have” if she mentions it at all.  The MCAD is ignored completely even though it too nearly killed me.

My whole family simply ignore the fact that I’m chronically ill.  They don’t ever ask how I am or how I’m managing.  When I meet friends in the street they always ask how my parents are, hell they even ask how my dog is, and never ask how I am.  It baffles me.

I know I’m not alone in that.  My best mate’s M.E. is ignored by her family too and they can get narky with her if she doesn’t attend family events, even when they’re a 2 hour drive away, like she’s being deliberately anti-social.   When they come up north to visit her, instead of staying in a hotel or B&B or taking her out for a meal they expect to stay at her home and for her to look after them – no accommodation is made for her illness whatsoever.

My Mum made a remark the other day which I also found weird.  She said “when you and your best mate meet up is illness all you talk about?” and I didn’t know how to respond.  It probably makes up half the conversation but isn’t that normal?  Our diseases dominate our lives and dictate how we live every second of the day, and when our families ignore that it’s bloody brilliant to have each other to talk to about it!  My Mum should be pleased I have that support cos I damned well don’t get it off her.

I have no clue what all this denial is about.  I’m sure it’s really tough watching your child suffer but I’m not sure how ignoring it is supposed to help the child.  Thank God for my ill friends as they are the only people who understand what life with chronic disease is like and the daily torment of being this relentlessly sick.

Advertisements

Weekly roundup

It’s Sunday again.  I swear there’s a time thief living in my house!

Monday was a BIG day.  Three old codgers from my Camera Club were going on a day out to Beamish living museum and had asked me along.  I’d never been but it’s a 90 minute drive away and we would be there until 4pm so although I really wanted to go I was worried it would all be too much.  However, I reasoned if I woke up that morning feeling crap I could cancel and if I went but conked I could always go back to the car and lie down, so I decided to risk it.  Beamish covers a large area and I had no clue how I’d cope with getting around but discovered there are free trams and a wheelchair friendly bus, plus they’d made the ground wheelchair/scooter friendly for the most part so actually it was fine.  An interesting day was had by all though I admit I felt proper rough on the journey home and my hips still haven’t forgiven me.

It took me a few days to get over the trip, during which time I had a migraine so bad it felt like someone was in my brain with a pick axe, but on Thursday I felt sufficiently recovered to meet my bezzie for a picnic lunch and to go on a dragonfly hunt in a local nature reserve.  The weather was glorious, if a little too hot, and I sat mesmerized for a couple of hours watching the dragonflies going about their busy little business, which appeared to involve lots of mating then sitting on grass stems to recover 😉  Nature is simply wonderful.

My right thumb, which I subluxed 10 weeks ago and which has been strapped up along with my wrist ever since, seems to finally be on the mend though the nerves are obviously still damaged as it’s still numb to the touch.  There were times I thought it was never going to get better but I forget how long ligaments take to heal and I just needed to be patient.  It’s a relief to finally have the tape off though cos it itched me like a son-of-a-bitch.

Y’know I said in last week’s roundup that I’d entered the Edinburgh International photography Salon and had all 8 of my images rejected so was feeling a bit deflated?  Well, things turned around this week when I discovered I’d won my first exhibition medals at the Midlands International Salon, including a Gold from the Royal Photographic Society with an image which Edinburgh had rejected!  It just shows how arbitrary art is.  That the RPS, arguably one of the most prestigious photography organizations in the world, gave me a gold and other judges didn’t even give me a pass mark for the same photo is bonkers!  You have to do what makes you happy and if other people like it fine and if they don’t that’s also fine.  Receiving a gold medal has really given me a boost and four days on I’m still buzzing 🙂

I’ve been working on two images this week.  One involved being dressed as a Nun which didn’t work in any way, but I’m happy enough with this one.  I’m calling it ‘Raven Tower’ even though it’s not a Raven in the picture but a Rook – I won’t tell anyone if you don’t 😉  My right hand was still strapped for this picture hence the gloves which I thought were an ingenious cover up!

I’m enjoying dressing up for my photos a little bit too much and often prance round the house in my costumes just for the hell of it 😉  Thinking about it the other day I concluded that my real life is so limited and my personality is so constrained by my illnesses that the selfies in my photos give me the opportunity to be anyone I like in any situation I like.  I’m currently working on a picture where I’m an Arabian princess riding a white stallion in the desert and I can almost taste the freedom of that when I’m creating the image.  We all need some escapism when illness leave us largely bed or housebound, particularly if that continues for many years, and I feel very lucky to have found a way to break free of my shackles.  The only time I left the house when making the picture above was to visit a nearby castle to phograph the turret – the moon, sky, bird and me were all taken in my bedroom!

Weekly roundup

The heatwave continues and while I am loving it it’s making both me and the dog feel pretty wiped.  A combination of the unusually high temperatures and high histamine levels which make me pee up to 4 times a night are also interrupting my sleep big time and I would kill for a decent kip.

I’m really not sure what my currently high histamine is all about.  I’m not eating anything I wouldn’t usually eat and am not stressed in any way – in fact, I’m super chilled and enjoying my summer.  My backside is covered in hives though, I’m having a pain flare, am exhausted and going back to sleep only three hours after I’ve gotten up and I’m peeing like a race horse which are my signs for histamine that is rampant.  The only culprits I can think of are my injuries from last month, a shed load of insect bites and my schizophrenic hormones.

I had some soul destroying news on Tuesday.  After seeing the ophthalmologist at my local hospital who agreed my floaters are so bad something needs to be done I’ve been waiting for a referral to a specialist at a larger hospital.  The ophthalmologist rang me on Thurs, however, to tell me that her referral had been rejected as “there is nothing wrong with my vision”!  I can barely see out of my right eye and my left gets worse by the day, to the point where I can no longer read for pleasure and editing my photos is so difficult it’s reduced me to tears on more than one occasion.   She suggested I find a vitreous Consultant and then ask my GP to refer me, which is fine but how am I supposed to know which Consultant to see?!  Over the years I have received so little help from the health care system it makes me want to top myself and put myself out of my misery.

I had a horrendously painful migraine on Weds night and at 2am caved and took some junior Ibuprofen, to which I had a reaction.  FFS.  However, it only lasted about 10 minutes and then settled to the point where I fell asleep, waking the next morning with zero pain.  God how I long to take drugs and not be petrified about anaphylaxis :-/

Despite my awful night I’d arranged to meet a friend for lunch on Thursday so dragged my sick and exhausted arse out of bed and made the drive up to the Lake, getting there dizzy, nauseous and spaced out.  I’m glad I made the effort though because I actually had a laugh and a brilliant natter and felt mentally, if not physically, better for it.

The Farmer rang me again this week and I admit I was quite curt with him.  For one I didn’t give him my number he stole it from a Camera Club rota and for two I’ve given him zero encouragement or reason to think I am romantically interested in him – get the fucking message and stop bothering me.

I entered an international photography salon this week and all 8 of my images were rejected, even photos that had won me trophies and Honourable Mentions in other salons and competitions.  I’ve never had all my images rejected before and I admit it led to a crisis of confidence with me spending a couple of days thinking I was a terrible photographer.  I already feel like a fraud who is scraping by on flukes and this just re-enforced my belief.  One of my fav online fine art photographers talks about this in a vlog and I relate to every word – women seem to be particularly prone to self doubt.  In the end I had to give myself a stern talking to and reason that even if no-one else in the world likes my pictures I like them and that’s all that counts.

Taking advantage of the hot weather and trying (in vain) to distract myself from my pain levels, I got a little padding pool out in the garden and played around in the water with my camera.  I didn’t quite know what I was aiming for but was chuffed with this image I’m calling Ophelia.

I’m liking myself with red hair so much I’ve sent for an auburn wig.  I have Irish ancestry and three of my cousins have gorgeous red hair, so maybe I was always meant to be ginger and not boring mousey brown 😀

Weekly roundup

The UK is enjoying a heat-wave and we may be on trend to have the hottest summer on record.  It’s been over 30C here in the North, which is virtually unheard of, and we’re having the most prolonged hot spell in over 40 years.   I luuurve nice weather but this is too hot even for me and the temperature in my bedroom hasn’t dropped below 26C all week despite a huge fan going full pelt, consequently there hasn’t been a huge amount of sleep happening and I’m now feeling pretty wiped.

Monday, one of my photography buddies and I took advantage of the sunshine and went down to the river with our cameras.  To be fair we didn’t get any useable shots but had a nice time anyway and ate our picnic lunch in a wild flower meadow.  In the afternoon I had to take Bertie to the vets.  He’s had a herniated spinal disc since he was about 3½ and now and again the pain gets really bad, so he’s been put on Gabapentin.  He’s had it before and it It usually helps but this time despite both that and daily paracetomol the pain still isn’t under control so I’m not sure what the next step is going to be 😦

Tuesday my Dad had his long-awaited appointment with the spinal team and has thankfully been referred for surgery.  He’s always been super fit but 18 months ago started with back stiffness and leg pain and is now unable to walk around his home without a stick.  His MRI showed spinal stenosis which can happen as we age, but his seems to have progressed at an alarming rate of knots.  I just hope he doesn’t have to wait too long for treatment.

Wednesday I received a call from one of the men at my Camera Club.  Can you remember we were given arranged seating at our annual dinner the other month and I was placed opposite a single, middle aged farmer who bored the arse off me all night?  Well it was him, telling me I had beautiful eyes and inviting me up to his farm.  I go to my camera club for help with my photography – if I wanted a boyfriend I’d join a dating app.  I had to let him down as gently as possible but it’s now going to be bloody awkward when we next meet up.  I could sodding well kill the woman who organized the dinner and placed me on a table with no less than 3 single, middle aged men I’d tried all fucking year to avoid.

Thursday I had lunch at a lovely local cafe with another camera club buddy.  It’s so fabulous to be able to eat outdoors, although all the goddamn flies are annoying and despite wearing insect repellant I have several, large, angry, I-want-to-scratch-my-skin-raw bites.

Aunt Flo this month has been a bitch.  I’ve had period, endo, bowel and back pain for 10 days now but no proper period.  I had brown gunk for 3 days then 1 day of light bleeding.  Nothing for 2 days followed by anther day of brown gunk.  The pain has been ridiculous though and has included shooting pains down my legs which have kept me awake half the night for most of the week not to mention the fact that I can’t sleep on my favoured left side because it sets off wicked bowel/ovarian pain, and to add insult to injury I’ve had no less than four migraines.  FFS I’m so over it.

With the pain, heat and lack of sleep I’m flagging this weekend so have just had a quiet time not able to do much of anything.  I’d had a couple of photos in mind though which I’ve worked on in the evenings, while simultaneously eating my body weight in Haagen Dazs and binge watching old episodes of the Kardashians to avoid the torture of eleven men in shorts chasing a ball of air around a field, otherwise known as the football World Cup 😉

 

 

 

Weekly roundup

All my wisdom teeth came through in my early twenties and have never caused me any bother, but recently one of the bottom ones has been painful and when I woke on Tuesday morning with a really sore throat and swollen glands on the same side I thought I’d better get it checked by the dentist.  Thankfully there was no abscess or infection but the gum was severely inflamed and needed to be packed with an anti-septic and anti-inflamatory dressing.  It tasted vile and was so minty hot my mouth was on fire for the rest of the night but it helped and that’s the main thing.  As you all know, though, I’m flaring at the mo and I did have a small reaction driving home in the car, which I now know was nothing to do with the drugs in the dressing and more likely due to simple exhaustion and the stress of the procedure.

I continued to feel unwell on Wednesday and was very MEish.  The Dentist said the sore throat was nothing to do with my tooth so I probably had an unconnected throat infection from which I’m still suffering, and for the first time in ages I was on the verge of collapse by lunchtime so had to go back to bed.  I felt both sick and ravenously hungry at the same time, which is usually the warning sign I’m getting a migraine, and sure enough by 8pm my noggin was thumping and the pain kept me awake half the night.

Thursday I’d arranged to meet my best mate for lunch but when I got up at 6am my head was still banging and I wasn’t well enough to go, so I risked taking some junior ibuprofen suspension which calmed the pain down and allowed me to drive.  I’m glad I managed to go despite feeling like a limp lettuce because I really enjoyed the goss and it was nice to be out of the house.

That night I was kept awake half the night with tummy ache which felt suspiciously like period pain.  I was only on day 16 of my cycle, though, so dismissed the notion and thought instead that maybe it was just collicky pain to which I’m prone.  Nope, it actually was my period – at least I think it’s my period.  I have all the symptoms: backache, period pain, nausea, migraine, exhaustion………… but no bleeding, just thick brown gunk.  Apparently this can happen when there aren’t enough hormones to cause thickening of the womb lining, which I’m hoping is a good sign that my peri-menopause is moving on towards actual menopause, but it’s cruely ironic to have looked forward to my bleeding stopping only to still have every period related symptom known to man. FFS!  I’m also monumentally unimpressed at having a ‘period’ only 2½ weeks since the last one.  Pleeeeaaaase God make it stop.

Friday I was back at the Dentist.  I’d had the appt booked for ages as it was just for a routine check-up but my gum was still inflamed so he put another dressed on and we’ll see if that finally does the trick.  This time I had no reaction at all, which is how I know my first reaction was nothing to do with the dressing.  Friday evening I started with another migraine (I always have migraines during my period) so was, for the third night running, awake half the night in pain. This week has been hard work.

As if all that wasn’t enough to be dealing with, I woke up Weds morning with a painful index finger on my right hand – I have no fucking clue why.  I already have my right thumb and wrist strapped up and now I’ve had to buddy tape my finger, which means using the laptop is tortuous.  My one distraction from all my woes is my photography, however using my editing tablet is aggravating the pain so I know I should be taking a break but I honestly think I’d go nuts, so I’m carrying on regardless and probably making the situation worse.  Here is an owl we saw at the flying display I went to a couple of weeks ago, which is still one of the best days of my life:

The good news is that my Mum had her latest test results back and her anaemia has improved to within the normal range.  She also had a bone density scan, having been diagnosed with osteoporosis 23 years ago and never having had a scan since, which shows her bones are much better than they used to be and she is now classed as having osteopenia rather than osteoporosis.  She was on bisphosphonate tablets for two decades then switched to a 3 monthly injection, but is now deemed to no longer need them and just has to take calcium & vitamin D supplements.  Maybe if she’d been monitored and had regular scans she might have been able to come off them years ago :-/  I was told off by a GP who used to follow my blog when I said that Doctors don’t monitor their patients properly but from my experience they absolutely do not.  It was my Mum who requested the scan – if it had been left up to her GP she wouldn’t have had one as long as she lived and carried on taking drugs she no longer needed.

 

Flares

Having been diagnosed with both Histamine Intolerance (HIT) and Mast Cell Activation Syndrome (MCAS) it’s often hard to know when I have a symptom flare who the culprit is.  Acute reactions are easy – if I take a drug and 20 minutes later get a whoosh in my head, my heart starts hammering and my face goes beetroot red my mast cells are having a hissy fit, and if the same thing happens 5 minutes after I’ve eaten I know it’s my HIT at play, but the waters become muddier when I feel insidiously and chronically unwell as is the case at the moment.

I’ve talked about this before, but for the benefit of people new to my blog these are the signs that my histamine levels are high:

  • Feeling exhausted but wired and unable to relax.
  • Insomnia, either difficulty getting off to sleep or waking during the night – usually around 2 or 3am.
  • Increased urination, especially having to get up during the night to pee.
  • Sluggish bowel.  I usually poop every morning after breakfast but this becomes every other day and at random times, even during the  night.
  • Flushing and feeling hot after eating.
  • Ligaments which injure super easily and refuse to heal.
  • Back pain which is muscular in nature.
  • Muscle spasms, particularly in the gut.
  • Nausea without vomiting.
  • Itchy skin and scalp.
  • Sore throat.
  • Oesophageal spasms which cause retching.
  • Sneezing, particularly on waking.
  • Increased or decreased energy.
  • Increased or decreased appetite.
  • And my old friend hives.

I am currently having one such flare of symptoms and looking back over the past couple of months I suppose I can see why.

  • My cleaner has been off so I’ve been doing way more in the house than normal.
  • My dog walker was also off for 2 weeks so I’ve had to take Bertie out more.
  • I split my lip open and had stitches.  There’s the shock of the event, the pain, the physical trauma and the fact my poorly immune system had to rally into action.
  • I subluxed my thumb joint which has led to ligament trauma, inflammation and ongoing pain.
  • I have a throat infection.
  • I had to have an emergency dental visit yesterday due to acute inflammation of one of my wisdom teeth.
  • And of course all the usual peri-menopause and endometriosis related gubbins.

It’s no surprise I’m not feeling great.

It all starts a vicious cycle though.  I am way too exhausted to cook, and feel nauseous much of the time, so end up eating a less than low histamine and less than ideal diet.  Add to this raging hormones and ridiculous food cravings and I know my ingested histamine is high.

Wounds and trauma stimulate mast cells, which release inflammatory and other mediators, which stimulate mast cells, which release inflammatory and other mediators, which stimulate mast cells…………  In a healthy person this cycle would happen once and then stop, whereas in MCAS patients the hand-brake appears to be faulty and we just keep rolling down the hill.

Having to do more physical activity than I know is good for me has made me really tired, but due to my high histamine levels I have insomnia and am getting up in the night to pee often several times.  This makes me even more exhausted and I gradually get more and more run down and open to opportunistic viruses and infections.

It’s incredibly hard to break the cycle.  I know I should probably have some enforced bed rest, but when your histamine levels are high and you feel really wired it’s soooo hard to just lie there doing nothing!  But it does usually help, so now my cleaner is (hopefully) back and my dog walker has returned from her hols I will have to force myself to chill, use my super powers to resist my hormone-related food cravings and give my immune system a chance to switch off.

Weekly roundup

I have been so naughty this week.  I’ve got the most intense cravings going on, so I caved and have chomped my way through a whole tube of sour cream ‘n onion Pringles, a family bag of Starburst, a family bag of Wine Gums, a frozen mushroom pizza (my first bought tomato-based pizza in 5 years) and a small tub of Salted Caramel Haazen Dazs ice cream.  I’m sure none of that has done my histamine bucket any favours and I’ve probably gained 5lbs but I swear my hormones thanked me and I loved every second of my binge 😉  Fuck it, you only live once and it’s not like the sky fell in or anything.

Tuesday night was the last evening of our beginner’s photography class so I hauled my exhausted arse along to show support even though I wasn’t lecturing.

Wednesday I decided to spend half an hour in a wildflower meadow taking selfies for a photo I had in my head.  Stupid here forgot to put her insect repellent on though and I’ve spent the days since covered in huge blistery, itchy bites.  The photo turned out OK though so that’s the main thing 😀

After having 6 weeks off to nurse her Father who has now passed away, my cleaner didn’t come again this week as her daughter had a hospital appointment.  I know they’re all legitimate excuses but when is she going to realize that the reason I have help in the house is that I‘m sick?!  If she worked on the tills in Tesco she wouldn’t have been given 6 weeks off, dying Dad or no dying Dad.  When my Nan passed away my Mum had one day off her 40 hour a week job for the funeral and that was that, even though she’d been taking turns to sleep on my Nan’s couch for 3 months beforehand to nurse her.  We all have stuff going on in our lives but the world doesn’t stop turning and we still have to work – she’s only here 3 hours a week for heaven’s sake.  Maybe that sounds harsh, but including holidays she’s had nearly 7 months off in the last 18 during which time I’ve lived in a dirty house and slept in a dirty bed and the reason my hand is currently killing me is because I tried to change the bed sheets myself in her absence.

Speaking of which, the only solution I could come up with to help my CMC joint was to tape my hand.  I found some YouTube videos showing the best way to go about it which I modified to cover all the areas which are sore, but I have to admit it’s not helped so I think I’m going to have to see the Doctor *sigh*.

Friday I had the plumber here servicing the gas boiler and fire and fitting a thermostatic valve to one of my radiators.  I also had the builder here quoting to re-grout my patio.  My house needs some expensive jobs doing, like a new front door, but as I’d love to move to a one story house in the not too distant future I’m hugely reluctant to spend yet more money on this one.  I’ve been looking for a new home for a year now though and had no luck so I could still be here in 5 years time and it’s difficult to know what to do.

Today is Father’s Day (why is there no Daughter’s Day?!) so I’m going out to lunch with the folks even though I feel rubbish and am absolutely wiped.  I know I should be grateful that I’m well enough to go out after spending years bedridden, but it’s not like I’m going to enjoy it – my Dad is loopy loo and my Mum will start off whiny and snappy (there is always something wrong with the food) then get increasingly giggly and stupid the more wine she drinks – so to be fair I’d rather be stopping in bed cuddled up to Bert and working on my photos.  Neither of my brothers has ever taken my Dad out on Father’s Day even though he’s their biological Father and not mine.  Why does this stuff constantly fall on my shoulders just because I’m single?

As you can probably tell I’m hormonal, crabby and not feeling well so I’ll shut up now, go and get some breakfast and try to find my happy head.  Onwards and upwards!