Not being listened to x I have been struggling with a carer . She isstressing herself out so much she doesn’t listen to me . She also wears perfume so even ” if ” she doesn’t wear it that day all her clothes smell of it . 

Today I knew she was coming . So I planned around it . I can’t shower with her due to the residue andthat she doesn’t listen x 

Plan soak feet , while she nips to the shop and comes back – sorted . List given , money given . Left after 5 mins – excellent . 10 mins later – oh that was quick 💜no . She had sat outside for 10 minutes . Why ? !!!!! 

So she came in told me . Ok , not happy . 

She then went into kitchen , I asked her to log out as I didn’t want her getting paid for 30 mins when she sat outside for 10 . Slow washing up , said several times I want you to log out and leave . 

Now slowly writing book – no I’ve asked you several times – you are trying to stay long enough to get paid . 

You see – if they stay 22 minutes they get paid for 30 . That’s why I wanted her to log out . It’s taking the pee . 

She didn’t want to be here at all . 

She left at the 19 minute mark . I was left with feet in water unable to move . No towel . Yeah . 

I rang my neighbour to grab a towel for me . Yeah . I told the agency I told her to leave . I flushed and was shaking x grrr x I will vomit in the morning and maybe have grotty guts . 

All because she won’t listen to me . The end of a beutiful relationship 💜 it’s been coming for awhile . 

The cat is loving her box , from my sons Christmas gift which smells of him , which has a blanket in he out in there x 

Today should have continued as it started with me being in bed sleeping x I moved at tea time xx nothing exciting just monthly rubbish xx let’s hope geoffery didn’t get out of his box xx 

Nearly 8 years

On the 5th it will be 8 years since my first anaphylaxis . Yeah . I’ve now had 40 and over 80 epipens ( or equivalent doses) and I’m alive 💃💃💃

On the 1st an opinion piece on epipens stated they are overpriced – yes . Over sold – no – it is incredibly hard to get an epipen prescription and over used – absolutely not proven by many studies . In fact underuse and delay is proven over and over again . 

This bought an interesting Twitter response …….. 

and makes me think ………. 

if a lay person has this / these opinions . Do some doctors also ? 

Is advice given to patients / family  re epipen use consistent , understandable and clear ? 

Why is there consistent underuse ? And delay in use ? 

Maybe it’s time for some research in this area . 

Over several years conversing with many who have had anaphylaxis and those at high risk I feel I have a grip on many of the issues surrounding epipen use in real terms in real anaphylaxis . 

Maybe I need to give these ideas to Drs who could do the research and help improve outcomes ? It’s a thought .

I’m mostly over my biggie 2 and a bit weeks ago . I’m back on my normal steriods 💜.  I feel the next infection may be starting but I may get away with it x ( everything crossed ) . The gp is bringing medical students to meet me on Tuesday afternoon . Happy days xx 

Raising awareness

Tasha Coates has a episode of medical mysteries showing Tuesday 29th November 2016 . On Channel 5 ( uk ) at 10pm . It’s on mast cell activation syndrome . Which for both of us includes anaphylaxis .  A condition we share that affects us in some similar ways but in other ways very differently xx 

We both have anaphylaxis but she tolerates daily trigger exposures better than I do xx so is being more active at charity work . Like scope’s diasability role models work were disabled adults go into primary schools x This is breaking down barriers and worries about disability at a young age . 

I’ve decided on how I’m going forward with my website thanks to valuable feedback from Tasha (@Natashacoates ) and others so watch this space 💞

Blog on scope this week

“I have a love-hate relationship with my benefits”

My blog on scope this week xx

A whole week of showers and thanks to Southmead hospital ( NBT) , Number 40 , scope and my GP coming to acceptance

So today will be day 7 of daily showers x happy days . 

It’s also day 8 after a big anaphylaxis . Anaphylaxis –  number 40 – allergic shock is were an allergy gets serious  -as Jack Whitehall describes it – all sorts of medieviel sh1t . The one last Thursday was a 4 epipen deal 2 of mine , 2 doses from the team . Needing 4 means I was ill , very ill . With the epipens comes a medical protocol which I had all of – Iv drip fluids , drugs , oxygen , breathing treatments ( nebulisers ) . The doses from the team kicked things back into order .

I had a party at one point . On moving to A&e I had an entourage of 12 . Including itu doctors and the crash team xx 

The nurses were epic as was the whole team . I felt safe . Southmead hospital is my home hospital in a new building . I tipped from red/itching into full shock infront of a consultant . They didn’t miss a beat . They treated me perfectly . 

I was scared but tried my normal – I’m ok routine , but the nurses said , your safe it’s ok to be scared . This helped so so much . Later , when I was settled, an ex workmate gave me a hug . I was teary for a moment but it again helped so much x 

I was ” hoisted” for the first time . It’s basically  a sling that picks you up when you can’t be moved any other way . I was in my chair and it tilts but doesn’t go flat and needed to be moved onto a trolley to get me to a&e resus xx it felt very very safe . Once I was up it cocooned me . 

So 4 epipens means my recovery is a bit longer x today I’m doing good , it’s 2pm and I’m not long up . I am slowly reducing the Meds and keeping safe xx 

My best mate is coming over and hopefully my daughter xx happy days xx my son tomorrow xx happy days xx 

I had my first trip out last week . I’m looking forward to next week xx 

The idiopathic part of Geoffrey has as ever made me want to play hunt the trigger . The staff are trained to ask – what’s the allergen . Once they saw my blue book – guide to the world if Jose – they were OK about not knowing x ESP once I was settled . 

It’s been a while since I’ve needed 4 epipens so I’m being kind to myself .

Last week I was asked by scope to do a blog x this was published Monday and is being read well . 

“I have a love-hate relationship with my benefits”

With all on longterm / life long dla being assessed for pip next year – me included – I wanted to get my viewpoint and experiences out there xx as a community we , the disabled are very scared about this . 

Over the last year my gp has been going through the process of accepting my illness . With rare things Drs can find it hard when they can’t fix us xx this has lead to some difficult conversations x This week he has come to acceptance . 

Last period without daily showers and she wants to come out !!

Since august 2009 I haven’t had daily showers or at times weekly showers . Being a woman and a woman of ” child bearing age” this means period week with ( if I’m lucky ) 1-2 showers . This isn’t me neglecting myself by choice . This is the amount of showers I can achieve with the care I have . 

Until last week . 2 months ago the care agency did a review and we saw I needed adaily shower and help to settle into bed . So they referred me back to social services . This bought a social work assistant . So she came to visit twice and we got information together and went to panel on the 22nd October . Panel is social services decision board on what care each person can have based on NEED. 

Today was my first shower for 5 weeks x my recent abscesses and water infections will hopefully reduce . I’m also discussing options with my gp xx 

Panel said yes – whoop whoop . My teatime call will be shorter by 15 mins but enough to cook a meal and I will have 30 mins at bed time to get showered and into bed . 

So now we put it to ” commissioning ” and hope my current care agency can cover it it a female carer . Then it can be booked in . So this month will be my last period without daily showers ever xx happy days ( soon very soon ) . 

2 days later 

Today I had the call to say this will start next week 💞 30 mins for a shower everyday and out of my box for 2 hrs every other week 💜 Roll on next Monday 

Tomorrow a podiatrist is coming to see me 💜

I dropped off the gps list of calls today . Oh well try again tomorrow . 

The other part of the new plan is ” social time” were I can go out with a carer  . Even wearing my face mask, my anaphylaxis risk and variable health mean I need an escort . A carer,  who can take over if needs be / give an epipen / call for help . This opens up the possibility of new groups , activities – karaoke 🎤🎉. 

So panel awarded 2 hours every other week . This starts next Wednesday at 2:15 . Omg I can’t even begin to explain how happy I am x no words . I cried on the phone when they rang today to say my agency could fill the call and when 🎉🎉🎉. Even tho I have plans for world domination from my easy chair I need to get out . To be a functioning member of society . Maybe even meet someone xx ( a long shot but a chance ) 

Roll on next weds . The wheelchair ppl are going to sort out Gavin – my chair . And FREEEEDDDDDDOOOOOOOMMMMMM !!!!!!!!!!!! 

And a welcome end to this – 

http://news.sky.com/story/im-not-seen-as-valuable-in-any-way-10340175

#whyimnotworking – to show reality of living with illness and/ or disability wether visible/ invisible – to debunk myths and fight for equity and equality .

7years and 1 day

So this morning I have noted it’s 7 years and 1 day since I had my first personal care in my own home . I started writing daily the next month . So I’ll copy what I wrote about it here x

From that first carer putting me at ease . After a huge anaphylaxis -7 epipens – in the August ( 13th) and another 2 weeks later I hadn’t recovered back to my managing self . Which , after a week per epipen , would be going out using a taxi and walking a short distance . It would be next month that I would get my first self propelled wheelchair . A friend had lent me a travel chair as my home was too small to use the Red Cross ( hired) one indoors . 

On this first day I had not washed my hair for 6 weeks or had a bath . I couldn’t wash myself even sat down without going blue ( aka smurf bird ) . K came in got me in the bath , changed my bed , dried , dressed back in bed and food in front of me in 45 minutes . Oh she also changed the bed sheets 💞 K did my shopping on s Tuesday , c became my cleaner keeping my home together and providing huge emotional support , on Thursdays . 

I was obviously worried about being embarrassed , no . Not at all . A bit of – jobs to do …… but also that K kept me chatting about this and that so the time ran by . This lady had skills . And when I was back in my bed , clean and fed I cried with relief . From my friend saying – look Jose you need help in early September it had taken just over 6 weeks to get assessed , equipment delivered and care started .

The huge anaphylaxis was to ct contrast – dye they inject that shows up your insides on the ct scan pictures . Yeah . NEVER AGAIN . For info on drugs to aviod with mast cell disease please go to – http://www.iamast.com/drugnos . 

For personal care in my own home I want a woman to help me . In hospital I have no issue with male nurses of all grades . But in my own home I want female help . There are few jobs exempt from the sex specific job guidelines and this is one .

So I became the proud owner of a bath hoist / cushion that helped me in and out of the bath . The guy who delivered was a health care assistant nurse with me in a past life so a bitter sweet moment xx 

So I have been having 3 care calls a day but I need a 4th and I heard last week I have it . This will enable me to shower everyday . EVERYDAY. I haven’t had this since 2008 . It’s only just sinking in that it is happening x 

We also went for social time xx I now officially have 2 hrs every other week for social time . In the form of getting out of the house 😃😃😃😃😃😃😃💃💃💃💃💃💃. No amount of emojis express how happy this makes me feel . There are coffee mornings and activities available I can now attend . Meet some new people . Maybe even a partner 🎉🎉🎉. 

We went for every other week as my health varies but some things are predictable x like lady time = flat out in bed for best part of a week – whoop whoop I can shower everyday , everyday during that week as I have the help now 🤘it will exhaust me but i will be going to bed anyway xxx 

So it’s 8 am . 

Fibromyalgia , mast cells ,TV and Radio

Today I have been on TV and radio . Discussing government review of assessment for disability benefits . In relation to ability to work  .

I was introduced on the piece as having fibromyalgia ( with other medical problems on the radio ) . I was diagnosed with fibromyalgia Dec 2008 3 days after my first anaphylaxis . Over time my symptoms have been explained by other conditions so I don’t see it as my primary diagnosis now .

In reading and researching re mast cells , I have found the role they play in fibromyalgia ( in me ) . Substance p , the nerve chemical overactive in fibromyalgia is a potent mast cell activator and pain causing  chemical . It both activates mast cells and is released from them .

Drugs to block the receptor for substance p are tantilisingly close to market so we watch and wait .

Research  has had also found higher level of mast cells in the skin of patients with fibro . In part explaining the skin pain experienced by many . ( ref )

In some ways I don’t comfortably fit the typical fibromyalgia box . With my anaphylaxis , with pressure easing pain – for most fibros this would be impossible to tolerate .

Patients with mast cell disease get bone pain . The test for fibro is to press lightly over boney areas – called pressure points . Also it’s estimated that 3/4 of individual with fibro may actually have ethlos danlos syndrome +/- with a proportion also having  pots ( postural orthostatic tachycardia syndrome ) . Mastcell activation , pots and eds are now a recognised triad of conditions seen together ( ill return with latest reference )

Other research shows low cytokines released from mast cells in some fibromyalgia patients x They could represent a subset with under activation of mast cells .

With mast cells living near nerve ending were substance p is the nerve peptide the interaction which is well documented will reveal more and more fascinating links with time .

So for me – Josie Evans opinion – fibromalgia is a type of mast cell disease notably driven by high substance p and anyone with fibromyalgia suspected or diagnosed should look at mast cell activation as an explanation of their symptoms . Also conditions they may have – that have proven mast cell links – which are seen with fibro like – neurogenic bladder , ibs ( particularly diarrhoea dominant ) but also constipation as mast cell chemicals damage the bowel nerve signal pathways and high serotonin in 1/3 of mast cell activation patients leads to increased bowel pain perception .

There are some who have pure fibro and medications work for them ( interstingly most block histamine which is high in mast cells ) . But others may find benefit in looking wider ESP if current treatments aren’t working for them .

In me , when well ( for me ) and all other conditions are stable ( a holy grail to be honest ) . I can see minor fibromyalgia . So I will remain describing myself as mast cell activation syndrome with other medical conditions .

As a neurological condition fibro helps explain my reduced mobility . So does mast cell activation , but the fibromyalgia explanation is more tidy and less complex

With time I will get better at explaining how 8 years of solid inflammation and fighting illness and anaphylaxis in my body has affected my mobility as much as everything else and how I have kept the mobility I have despite long periods being bed bound  . I know all the biological pathways that explain it all –

Histamine, bradykinin , paf  ,tnfalpha , crp , il6 , interferons , leucotrines , il33 , pristoglandins as a start . For pain – substance p , serotonin , prostaglandins , natural opiates . I can go on .

But sometimes the simplest explanation is the best
And today was about discussing the issues at hand not wether fibromyalgia has strong clear biological proven links to mast cell . So although for a time I saw fibromyalgia as a misdiagnosis I now see it as a part of my puzzle that needed better understanding and explanation x

Highlight from the radio interview

http://bbc.in/2dUmulQ Xxx

and my day and life and illness continued as it does – Meds at 6am , helped by me jumping out of bed at 5:40 5thinking it was 6:40 . Breakfast at 8- after chasing my care agency . Sadly yesterdays messed up care calls ( 8.30 –  should have been 7 and 4.30pm last call of the day )  didn’t lead to  forethought in me ,  to have a sandwich made , tho to keep my Meds on time I did eat my dinner cold . Thankfully I’m a bad diabetic and keep chocolate in my hand bag and the am carer came before my sugar dropped quickly ( requiring an ambulance etc ) .

On the cold dinner , I need a Med mixed inhot water 30 mins before a meal – but if I take it too early it wears off too early and I get symptoms before the next dose . So I should take the evening one at 5:30- eat hot meal at 6:15 . By 7pm my blood sugar starts dropping . So call at 4:30 meant Med at 5:15 – absolute earliest otherwise it wears off at 9 pm and the next dose has to last until the morning – which it doesn’t and it leads to 3am swelling and flushing – which can and has moved into life threatening anaphylaxis , so ate my meal cold at 6pm – the carers hour was up at 5.30pm .

So today breakfast late , had a snooze woken by care agency saying , lunch will be late . Lunch followed by domestic , borrowed a fiver from my neighbour as I haven’t been anywhere near a cash point in a week so zero funds in the house  for milk – the carers can’t take my card/ pin . She popped over with the fiver then went for a fag . Then the district nurse came and redressed toenail I ripped off last week on the bottom of my kitchen cupboards when tired driving and misjudging the night of my Wherlchair foot rest .dn left x  Neighbour returned as did carer . Carer left , chatted with neighbour until teatime carer came . Thankfully teatime call ontime . So Med at 5:30 hot food 😀😀😘at 6:15 and now last Med at 10.30pm .

Mondays are my full day . I try and spread out callers so I speak to someone other than the carers as i can go several days of me and them . They are lovely but have to do jobs so at best I get 15 mins total conversation ( not instructions ) through the day . 2 min am , 3min lunch and 10min ( sounds too much compared to reality ) teatime . I’m so ready for my bedtime/ shower call to start .

It’s all relative

So another day , another bed day following an admission to drain an abcess and iv antibiotics . Whilst I was in the nurses were saying how hard it is and how well I was doing . Yes and yes , but when you’ve tried dying 39 times times -anaphylaxis – lesser evils are just that .

I really can’t get excited about anything less than resus or intensive care .  My sister only worries if I am worried . Which for me is full anaphylaxis and being admitted after as I’m too poorly to come home .

I’m not making light of my situation . It is pants but it’s all relative .

When I said ” I can’t get excited about ” to the health care assistant she said – yep , your really a trained nurse 💞💞💞😍 I might not wear my stripy uniform anymore but I still think the same 🎉 I’m in transition . I don’t feel I ” am a nurse” anymore but neither am I an ” ex nurse” I’m somewhere in between .

The surgeons wanted to do a general anaesthetic – then I saw the anethatist ( boy he looked about 16 ) and he asked . Do you have any allergies . I said yes . Here’s my book ( guide to the world of Jose ) he went a bit pale as he read it and excused himself . He came back , said we need your old notes . And we will plan from there .

Then a surgeon came back in , how about doing under local anaesthetic – yep – that sounds perfect – with some fentanyl and steriods – & local anaesthetic which has been allergy tested – lovely and so we did . And all went well . I was given antibiotics into a line too , 4 doses 💞 . I was unconvinced they will completely kill the bug as the oral version didn’t . In me if an abcess keeps on growing ( doubling in 48 hrs ) with an antibiotic it’s going to end in an operating room  (OR) . That was Saturday I escaped on Sunday 🎉 .

Today the swab results came back – resistant to flucolxicillin – the antibiotic given . So waiting on gp call to decide what next . I suspected it would be resistant as I have had A LOT of flucloxicillin over the last few years .

My son who is 19 waved me off in an ambulance for the first time . I could see he was tearful and I just wanted to give him a huge hug . Over the last year I have been slowly bringing him and his sister into my world at their request . Not fast or to shock in anyway . But to help them as they become young adults to experience things that many don’t until middle age or later xx

I let them visit me , the first time for them during my hospital stay ,  last June and it struck me when my daughter got a lift to the hospital with a friend who was going to see her nan , ( on another unit ) that the generations were getting blurred . Even on this first time I waited until I was some better so they didn’t get too upset .

My 2 want to know when I am in hospital regardless of the cause . Over their exams I had 2 teeth out and I didn’t tell them as it would have been too much for them . But now we are back to normal service xxx

For them already , an admission for a minor op is nothing to worry about . It’s all relative .

Memory the size – sorry what was I saying X

Today I have the memory the size of a goldfish experiencing dementia . It took 3 reminders for me to complete a bank transaction . I’m picking to shows then forgetting within a minute and channel hoping again then thinking ohh , I fancy that to find I’ve already selected it 😤.

Why ? I have brain fog . It was much better with Hydroxyzine – ucerax to be precise. But ucerax has been stopped being made and the alternative is full of junk I can’t take 💩. Hydroxyzine helps several symptoms – needing to wee more and urgency and some control the longer I go without . It stopped the very very hot  feeling ( like my blood is hot ) and stopped my evening temperatures . It stopped me having to firefight reactions so much . I’m back on Piriton , which helps but it’s not enough so I’m having to rescue dose most days . And it helps the brain fog . It helps my short term memory and concentration and reduces the number of coupe moments – why coupe ? The first time I noted word finding problems was when I was trying to explain a top gear – nope I need meds and sleep

Brb

Afk

I’m back 💞3hrs later . I had some antihistamines and slept . I’m out of bed in my day chair relaxed . I’ve had my lunch . I’ve ordered meds from pharmacy 1 . I’ve emailed diabetic nurses to order specilist insulin which will go to pharmacy 3 at my hospital . Pharmacy 2 I need next week .

Right

A coupe moment is where I struggle to find a word . As a child this showed as selecting the wrong word . The coupe comes from me trying to explain to my then partner that I had seen a top gear section on coupes . I was saying like a sports car , no not an estate , less doors, smaller .

I get this in speach and in thought and it’s the first sign a reaction is starting . I cFlushing comes about 5 mins later . Other early symptoms are just losing my train of thought completely . Like whoosh – gone . Another is being suddenly tearful for no reason or looking more upset than I feel – like sobbing but I’m not that upset . Another is tinnitus and lastly being suddenly grumpy for no reason xxxx if I take antihistamines at this point I may get away with it settling before it becomes serious .

However – about 1/5 become full reactions and most become anaphylaxis . Having background meds blocking the chemicals released from the mast cells means now sometimes I miss early signs and jump streight into bigger ones xx

So I’m really missing the Hydroxyzine xx

Never a dull moment in Josie land xx

So what is anaphylaxis – it’s were the mast cell opens up and spills out pre stored chemicals which cause symptoms .

The effects are

BP dropped

Pulse up then drops

Swelling in airway , bowel , bladder , skin -airway – throat close

Spasm in bowel . Airways , throat

This can happen quickly in 3 minutes or slower over several hrs if mast cells put out some chemicals then completely empty later or meds partially treat the process were fluid leaves the blood – causing the low BP – and swelling .

Treatment – EPIPEN – epinepherine auto injector and

999/911

http://www.iamast.com/anaphylaxis

http://www.epipen.com

http://www.epipen.co.uk

I’ve had 39 to date . Over 70 doses . Paramedics bring kit , fluids , oxygen and drugs to maintain me until I get into hospital .

My memory gets like this in the buildup to a biggie X I hope it’s just the lack of Hydroxyzine . Not a warning . My bowel swelled last night so I’m hoping it’s the end of that reaction xx

but hey , at least today I can fart with confidence 😝🎉🎉🎉🎉