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 πŸ’œno . 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 πŸ’œ 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 

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Nearly 8 yearsΒ 

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 πŸ’ƒπŸ’ƒπŸ’ƒ

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 πŸ’œ.  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 awarenessΒ 

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 πŸ’ž

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

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 !!Β 

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 πŸ’ž 30 mins for a shower everyday and out of my box for 2 hrs every other week πŸ’œ Roll on next Monday 

Tomorrow a podiatrist is coming to see me πŸ’œ

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 πŸŽ€πŸŽ‰. 

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 πŸŽ‰πŸŽ‰πŸŽ‰. 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 πŸ’ž 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 πŸ˜ƒπŸ˜ƒπŸ˜ƒπŸ˜ƒπŸ˜ƒπŸ˜ƒπŸ˜ƒπŸ’ƒπŸ’ƒπŸ’ƒπŸ’ƒπŸ’ƒπŸ’ƒ. 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 πŸŽ‰πŸŽ‰πŸŽ‰. 

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 .