General Support

Ok, welcome to a club no one wants to be in <3

 

Here we discuss the reality of living with a mast cell disease, the diagnosis process and everything psychological ;-) and real life related.

 

The average time to diagnosis from first symptom is 10yrs+  which is horrifying. So by now, you have probably been doing the dance of the specialists for a while. As you know, from your symptoms, we cover a number of specialities. Each one we don't quite fit into.

 

Each doctor has a set of possible answers-diagnosis. Some common, some rare. This analagy is used: in medicine the most logical condition should be diagnosed, if it looks like a horse and sounds like horse, it's a horse: these are the simple diagnosis. BUT each doctor has a small number of rare conditions: these can sound like house, but dont quite look like horse's, they are . . . Zebras! To work out if you fit that doctor's group of diagnosis you need to go through an assesment, tests and conclusions.

 

Now, doing this many times can be very distressing . When the doctor knows you don't fit into their camp there are 2 responses -

1) It's not my speciality , I'm sorry -  maybe with a few patronizing, "there there's".

 

2) I don't know what's wrong with you, then suggest you may be anxious etc. which is infuriating - all the way to suggesting a psychiatric assesment.

 

You will occasionally find one who thinks of something and suggest another specialist.

 

Top Tip: Don't get angry ;-) they just dont know. They are not saying you aren't sick. Just move on ;-) as your energy is precious and doesn't need to be wasted on them.

While all this is happening you are getting sicker by the day and scared. I was very scared. I did several things:

1) Watched my food like a hawk trying to avoid triggers

2) Put a brave face on

3) Tried to forget how unwell I had been (anaphylaxis)

 

Over the next few months I continued like this. Then at the year mark I finally let myself feel how hard it had been. I was devastated.

BUT I then concentrated on getting the tests I needed. Putting all my energy there. I was waiting for a holy grail - a diagnosis that I would completely recover from.

 

Then my last holy grail - a diagnosis that I could be completely cured from - was ruled out and I had to let it in. This bought me out of denial-kicking and screaming. I was heart broken.

 

Having your life change in so many ways brings grieving process. There are 5 stages . Denial first, then I went into bargaining: if I do this - sleep, eat and avoid triggers - I want or I will be able to . . .  for me this was about seeing and being close to my children.

I was trying to do all I could, almost too much. It took a nurse saying to me that I should stop pushing myself, she could see I was making myself iller by doing so. Then it clicked - I was stuck - I couldn't cope with my body dictating to me. That I wasn't in control, my body was - so I decided to accept this - that I needed to listen to and give my body what it needs. Serenity moment.

 

In amongst this I would feel angry or depressed. One moment feeling fine, another feeling so sad or feeling positive (bargining) and then angry. This wasn't helped by me not having a reason as to why I had become sick.  Somedays I would describe angry as frustatrated, and then I made a conscious decision not to, as this was actually downgrading my emotion. This allowed me to get to the bottom of my anger and to allow myself the emotions I was feeling.

 

Depression showed as tears whenever anyone asked about if I would return to work. Sometimes I would sound pragmatic, "probaly not", this was mainly to avoid deep questioning which would be too much for me.

 

Then acceptance came.

My moment was when I was admitted to my old ward and I got very ill. I felt safe. I knew I would be well cared for. It was the first time I felt at peace with it.

 

I still have my moments but that overwhelming, crushing grief has passed.

 

We have anxiety as a mast cell symptom - which comes from 3 of the mast cell contents. If this is beginning you may feel suddenly angry or grumpy and within minutes begin with other symptoms.

 

If you feel emotions suddenly, consider they may be symptoms before assuming you're not coping ;-) xxx

Ways of coping ;-)

In the first few months I could think - this isn't forever, I can cope with this. Then I got to a year  of being ill and I had to begin to look forward which was beyond scary. My brain couldn't cope with long term. So I now think medium term. This allows me to deal with practical issues - like money and my home . I also found that it allowed me to deal with my emotions .

 

The second thing I found was I kept saying JUST. I was constantly explaining why I needed certain things. But I was minimizing my needs, experience and emotions, and others were missing what I was saying. I would say "I-Just- feel . . " "I just need" "I just want". I banned the word 'just' for a good while and I began expressing myself with confidence again.

 

Good, bad and down-right horrid days

 

You know how true this is. I found that I had and still have phases to a day. No day is completely bad. I find thinking in phases helps stop me getting down in my mood. I let myself be and wait for things to improve ;-) If I have had 2-3 bad days I get fed up. Bed days I am asleep so don't have time or inclination to think . But bad days I can think, but not do much else .

 

I was feeling this and spoke with the lady I first contacted who had idiopathic anaphylaxis as well. Her response was -ohh good, describing bad days means you're having a good day and in that moment. I was able to switch it in my mind xxx I let myself be now and enjoy the good days

 

The reaction of others will have an impact on you

 

We all expeience various things

-friends being fair-weather and running for the hills

-partners not beleiving us especially if we have negative test results which is common

-Families not wanting to talk about it.

 

I have noticed those around me go through several phases

 

1) She can't be ill, she's too young, younger than me

 

2) she needs protecting

 

3) she's depressed

 

4) she's obsessed

 

5) she's still her: just ill xxx

 

While they go through this they can say things which they feel will help or out of frustration at not being able to help you. This can be "there , there, it will all be better soon" to comments about loving to be able to havea  nap in response to you explaining that you've slept in the day due to illness.

 

In response to this I did a poster of positive things to say. Otherwise  us/ we as the ill ones go silent and the non ill think we're ok xxx

 

Things to say to someone with a

long term illness or disability

 

• How are you today – and please don’t feel upset or uncomfortable if they say  - "ok in head, horrid in body" or "yuck to be honest".

 

• Please listen – we know you can’t make it all go away but being able to talk openly helps so much

 

• Please accept I am ill or disabled and I am doing all I can every day to be as well as I can and live as independently as I can

 

• Please know I would love to be at work, get through the day without having to sleep or taking medications to keep me alive and going

 

• Any comments which suggest differently hurt me and force me into silence as I don’t want to upset you, and by you responding that way I worry that I am /my illness is hard for you and I love you and don’t want that to happen.

 

• so next time you ask I will say fine thanks, even though I am crushingly lonely and scared

 

• Please understand that by saying, I am rough today I am not attention seeking I am just being honest.

 

• Please know I know you want to help but don’t know how to – listening helps, company helps, helping me find solutions when they will help, helps

 

Please feel free to put this up at home

 

 

Being ILL is scary, especially when you have serious symptoms and doctors are scratching their heads.

 

I knew I wasn't panicking  but panic attacks can be a mis-diagnosis . I had a nurse say this to me and I said no I've been through this to check. I want to explain cruicial differences ;-)

 

So to the right is a full list of panic attack symptoms -

In mast cell symptoms /events/anaphylaxis -

 

-The flushing is DRY - NO sweating . If it gets to shock the person will be cold and clammy

 

- hives or nettle rash are present

 

-There is swelling-angiodeama of anywhere in the body

 

- Breathing is fast but deep - not fast and shallow as in panic attack

 

- Swelling in the throat causes stridor

 

- The dry mouth is like very dry .

 

Other symptoms can appear the same in name but in practical experience they differ .

 

Ref 1

Ref 2

 

I can hear you saying-But I need to do . . . the house is dirty, I haven't seen Joan, John or Jane . Many of us with mast cell conditions have what is known as type A personalities - organised, driven , in control of our lives and this illness comes along and takes our control away in seemingly every way.

 

This is where listening to your body comes in. Your body has a new operation manual. If you listen to what your body needs and do it, you will get so much back ;-)

 

This is HARD . I know . I have lapsed and so will you ;-) But give it a try. One thing mast cell conditions are good at is complaining .

 

If you do what you always did, you will get what you always got ;-)

 

Believe me the tempation to dig my heels in and be stubborn and ignore it or try to override it, is unbearable.

 

Give it a try. To help me feel in control I did a few things ;-)

 

- I have a plan - of realistic goals I can achieve each day

- see jobs that I can't do and give to others as delegating ;-)

- use my energy wisely. It is finite . I see it as spoonfuls, each one to be used with care because when my bowl is empty- it's empty .

The Bucket Theory

 

Your mast cells are opening dropping contents into your body constantly.

 

If your body is a bucket it will gradually fill in different amounts according to which triggers you are experiencing.

 

When it gets too full it overflows - causing symptoms-up to anaphylaxis

 

The medications in effect stop the mast cell chemicals causing symptoms - so are like having holes in the bucket.

 

The art is keeping the level in the bucket as low as possible.

 

The stress of anything, including appointments churn up my bucket causing waves and spillage. If the stress is extreme-emotional or physcial - my bucket will overflow and have waves = big reaction .

PR2000006451_card2

As well as overwhelming feelings of anxiety, a panic attack can also cause the following symptoms:

a sensation that your heart is beating irregularly (palpitations)

sweating

trembling

hot flushes

chills

shortness of breath

a choking sensation

chest pain

nausea

dizziness

feeling faint

numbness, or pins and needles

dry mouth

a need to go to the toilet

ringing in your ears

a feeling of dread, or a fear of dying

a churning stomach

a tingling sensation in fingers

shivering

shaking

 

Rebreathing your own expired air will relieve symptoms .

For more details press the link button

Facing your fears ;-) -These are rational

 

Mine were of dying, of being ill forever and leaving my children. I was finding them hard to tame. So I went through them 1 by 1 and established if they were as big an issue as I felt or was I already dealing with them?

 

In the process I reassured myself on some and had a plan to deal with others. It helped knowing I was having rational fear not irrational, as I was being made to feel by a medical team who didn't think I had anaphylaxis .

 

I have revisited this at other difficult points along the way.

 

I set up some words with my family describing how I was feeling .

 

Most people's understanding of illness is maximum of 2 weeks of flu. So to get them to understand you have to begin remembering this . I set up 4 words which described how I was in relation to serious symptoms. This stopped me having to endlessly describe how I was feeling, which was making me feel that they would never understand and scared that in a biggie when I couldn't communicate well and they wouldn't act. These words can be anything ;-) Colours, names , places , natural locations - Mine are

1) bothered-a bit itchy something is triggering me

2) niggling - more symptoms but not turning into anaphylaxis

3) ramping up - becoming serious, be ready.

4) Full monty -anaphylaxis -Call 999 and go to anaphylaxis page ;-)

This worked well for us. It took away the anxiety of those around me as they were constantly on high alert . They could relax a little

 

Finding me again - With my body changing and my mind being-horribly affected by brain fog- I felt I had disappeared- didn't exist anymore.

 

Then a freind suggested giving my condition a name. This would act to seperate me from my illness.

 

I would like to introduce Geoffery - he is my  IA - a barely house trained tennage monkey, who needs daily care and clearing up after.He is not to be trusted, learns new tricks -and if I irritate him whoah chaos -anaphylaxis .

 

I picked Geoffery because it sounds so safe and a bit boring when my IA couldn't be further from it.

 

Having named Geoffery has had the desired effect. I know what is him so I can be me again.

tetly

Brain Fog and emotions -

 

Brain fog turns me in to a goldfish with dementia who is also a monosyllabic moron - I still hate it as I feel like I am losing my mind. I'm not,  histamine is just messing inside my brain.

 

Sudden anxiety when you don't have any cause or anger (rages), grumpiness or irritability are all brian fog.

 

Flushing and other symptoms follow within 5 minutes. before I was on the right histamine blocker for me- i was like this 24/7

 

My demented goldfish was having me forgetting what I am watching 10 seconds into the ad break, calling someone and forgetting who I am calling within the time it takes to ring, forgetting names and simple words etc.

 

This has improved with my meds. I now only get like this when I am warming up for a biggie.

 

In the week before a biggie I will have 2 mediums and a close call for the epipen.

Things you may object to people saying

 

- "You're anxious" - because it suggests irrational fear

 

- "You have pseudoallergies" -the label medicine gives to non-IGE allergies -But they are real and cause real symptoms to you. We favour True allergy(IGE) and triggers as names.

 

- "You have intolerences" - again doesn't describe your reality.

Geoffery being looked after, doesn't gaurentee him not misbehaving ;-)

 

Remember-

 

- He learns new tricks

 

- He is not to be trusted

 

I struggled with this because I wanted my condition to behave the same every time so I could gain some understanding and be able to predict what may happen. It doesn't work like that.

 

I tried assessing myself when I was ill and then decided when I needed my epipen - I nearly left it too late -I passed out while it was working.

 

So now I trust my EPI PEN will work - and it does. I've had over 50 doses now and its both saved my life and my body. I have no major organ damage.

 

Geoffery isn't my friend, he's a barely tolerable house mate-think Sheldon from BIG BANG theory . Sticking to the rules helps ;-) but doesn't = no truly bizarre behaviour.

Juggling more than 1 condition.

 

I have the dubious pleasure of have 3 major medical conditions.

1) Idiopathic anaphylaxis and angiodeama

2) Addissions disease

3) Diabetes type 1.5

 

The symptoms for these cross over. So I have got used to thinking of what the source of a symptom may be. This felt overwhelming at first, but now I have noticed the differences between how each condition presents the same symptom.

 

Thirst - Diabetes due to high sugar and IA due to impending anaphylaxis

.

Diabetes thirst is at a lower level coming on when my suagr is over 17. I am normally itching by now down below but not flushed

 

IA - very severe thirst suddenly with lightheadedness (at rest)

 

So I'll check my sugar and take antihistamines and then drink until the thirst passes.

 

Low blood pressure -

 

IA and ADDISSIONS .

 

In IA the dizziness comes at rest when sitting up

 

In admissions it comes when already laying down and also makes me shake if I move at all (roll over) .

 

Some mast cell patients have EDS and/or POTS

 

POTs gives increased pulse and low BP on movement. This is different to mast cell / IA dizziness which comes on at rest .

 

In panic attacks dizziness is a late symptom but in Mast cell it is an early and constant symptom.

 

The juggling lady above looks very calm and together but in reality we are feeling more like the man below!

juggling juggle

Work, kids, relationships, in laws, freinds, house hold, money( or lack of ) , medical worries .........................

 

All make us feel like the juggling chap.

 

In all this I have lived by the poem/prayer

 

May I have the Courage to change the things I can,

The senerity to accept the things I can't and

The wisdom to know the difference .

 

This has been hugely useful to me.

 

I also found 3 songs which helped me through the hard times .

 

Paul mcCartney- Let it be

 

 

 

and

Bon Jovi- satuarday night

 

 

 

and

You will never walk alone

 

 

 

Coping and in time living with these conditions isn't about being super human but just being YOU xxx

 

Talking, venting, crying whatever you need to do is one of the most important things you can do. I have included a forum here for you to connect with other patients with Mast cell conditions - who understand ;-)

 

You aren't alone

 

 

 

 

 

 

 

Don't plan to plan

 

Some of the pressures come from worrying about letting people down. A freind who had become ill, had told me not to plan to plan and this was very good advice for me . It took away the worry and allowed me to enjoy the things I could do - My achievements. This actually surprised me as it realised I could accept my new abilities .

 

This involved not looking back all the time -

 

Remember objects in the rearview mirror appear closer than they are.

Money

Money: great if you have it, not so great if you don't.

 

The reality is about 20% of mast cell patients are continuing to work. This is mostly insurance driven (USA) more than health driven.

 

The reality of having to apply for benefits, disability allowances and not earning is very hard to deal with. The systems themselves are challenging to say the least. The advice here is based on the UK system. Info for the USA will follow. I need to chat to a lady who knows!

 

In the UK currently we have:

1) Employment support allowance -which is sickness benefit. It has various sections depending on how much national insuarnace you have paid.

2) Housing allowances

This was known as housing benefit now housing allowance.This awards money towards housing and council tax.

3) Prescription charges

These are included on certain benefits -but not on others. If you are on a benefit and are paying prescription charges follow the link below for the form you need to fill out, sign and return. It's based around low income and those on benfits will be entitled.

 

Disability benefits

Disability living allowance .This benefit is to allow disabled people to operate within society. It is hard to get.  

 

Top tips -

 

- Be brutally honest on the form about your daily reality

- Expect to appeal up to 3 times

- Use the citzens advice centre for assistance in form filling. I intend to build up a national directory of other useful charities in these matters .

Loss . . .

Of work, of role

 

It took me a year to stop bursting into tears when I thought about not returning to work. It wasn't until it was gone that  realised how much of who I felt I was ,was Josie - the nurse.

 

Hospital admissions were torture having to sit and watch others do what I used to do, but know I can't do physically and mentally anymore. It was the mental bit that was hard to say out loud and I paused writing it. At first I felt lazy, stuff building up around me and having to stare at it.

 

Over time I have stopped feeling this way xxx but I still find myself lapsing into trying to be everything to everyone .

 

A more personal note

 

I have written a book about my expereinces of becoming disabled . I am going to post parts here but am also aiming for publication .

Disability on various levels is known to come with mast cell diseases. It affects eveyone differently and I am not writing to worry anyone but more to reassure and offer pointers on getting what is needed.

 

I had 11 anaphylaxis before the one that hit me hardest. In total I have had 32. My epipen and other treatments means I have NO organ damage, which I think is a bit of a miracle .

 

Physically I tire very very quickly, THE FATIGUE is still present . I have pain. which is managed mostly with painkillers but I also use other coping mechnaisms (see medications).

My legs shake because of these things. I can transfer chair-to-chair. On a good day I can walk a couple of steps holding on to furniture. On bad days I struggle to stand to do personal care and toileting needs. If I am reacting then I get dizzy, fast heart and short of breath. Brain fog impacts my moods and being able to cope with daily stresses and illness and increased stress .

 

So

 

I need help with things -activities of daily living.

I live alone so don't have partner etc to help me . I have 2 teenagers who live with their Dad close by. So how do I cope ?

 

Social care

When you are in this situation you can speak to your GP to speak to social services about you having an assessment

a support worker can refer you, or a family member, or you can ring yourself.

If you are in hospital then the ball can begin rolling so you have the help you need on discharge .

 

You/the referrer talk to the operator at the adult social care department at your local council .

They take details and send details to the relevant team

After a certain amount of time ............ feel free to keep ringing

You then have vist at home from a social worker

They will see what you need -need not want

Then look into ways to provide the care you need .

This can be -

-social services employing a care agency on your behalf

- social services giving you the money and you pick who cares for you and pay them.

This can be - a private case agency, an individual you interview - some disabled people call them PA.s or acurrent family carer ( in certain situations ) .

 

You will be financially assessed to see if the care will be free or if you will have to contribute

 

They will also get other professional involved -

 

OCCUPATIONAL THERAPIST . They look into ways to adapt your environment and use equipment to make having care/ you being cared for easier .

They will come and do an assessment

This will inculde absic financial assessment

Then you will order equipemnt which will eb delivered and installed . This can be anything from grab rails , bath seats,to full romm adpations-bathrooms, kitchens and ramps for access .

 

The OT can refer to the local wheelchair service if you need a wheelchair .This can take time but is a very valuable service

 

Ask the GP to refer to physiotherapy -who can order mobility equipment and can refer to teh wheelchair service .

 

Having care ;-

 

I contacted social services september 09 when I had had a huge anaphylaxis and wasnt able to cook for myself, bathe or do any house jobs .Even trying to have strip wash make me go very short of breath and a bit blue . I went to a freinds for 2 weeks becuase I was so poorly. But I wanted to be in my own home and have what I needed .

In early october a freind came over who also uses a wheelchair and he told me to make sure I got care . I was assessed in the middle of october by the social worker . OT a week after -she ordered equipments- a bath seat, a grab rail , a sofa riaser and a mattress raiser -as I had to sleep sat up and was waking when I slid down the bed-short of breath. .My care began on the 1st of November .

 

May I introduce Mummy karen -my carer the first day and for nearly a year .On that first day she just got on with it ,chatted loads while she bathed me and did all I needed .I was fine. releived to be clean.I hadnt bathed for 4 weeks .I also felt safe. knowing I was going to be helped and kept an eye on . I found it easier than I thought i would .

 

The OT reassessed in 3 months and did a housing needs assessment .(more below)

 

An easy decision ?

 

No, it wasn't. I stuck it out coping for as long as I could- by coping I mean existing .I had a boyfreind who when he came over 2-3 nights a week would cook, but he had to work out of town in the spetember . I lasted 3 days before I had an anaphylaxis . Any minor exertion made me swell ,short of breath, flush, itch etc . In hospital the next morning the doctor said that if somethings didnt chnage soon id be sat in a wheelchair with bits dropping off - but I had no idea how I could change anything becuase 3 days alone had =hospital .

 

I thought about it and relaised I could cope if I had care and independant wheels .

 

The way I have delt with it has been to see that the jobs I have others doing I am delgating ( becuase I cant do them myself ).This means this is my decision -and it is ;-) i didnt decide to get ill but i can decide how to deal with it . Beleive me I pushed myself on many levels .

 

I do everything I can do myself . This gives me my dignity of independance . I had a nurse say - we think your care is making your more depndendant - I held back from swearing -and explained that its actually the opposite.  By having care I feel less dependnat . My needs are met. I am not sat here smelling with stuff and jobs building up around me .

 

When I have new carers I feel more dependant because I have to tell them what to do . But i understand I need to .

 

Any suggestion I am not makes me upset becuase I am very determined and very independant .

 

Initially I prefered older carers because I felt embaressed about my body . Now I dont mind -  female if I have choice . At home definately.  In hospital I had a male nurse help me wash and I think he was more embaressed than me . If I am very ill, I dont care about male/female . My neice asked recently- so how does showering work -and iIgave parctical description- but she meant how do iIfeel sitting strakers/naked with someone with me . I said I dont mind anymore. Some days I remain covered. I'm always boiling hot so dont get cold .

 

I moved areas in sept 10, so have expereinced 2 areas . The first I had care paid for directly by social services . I had a couple of occasions my calls were missed and this caused me a huge amount of distress. basics - like the commode was full and I was hungry were the problem. Here in my new area.I was paying for my care but I found this incredibly stressful so am not on socal services paying my care agency directly .

 

When my diabetes went full april 11, I needed my call times changed and this didnt happen for a while.  But now it has and it has helped me into a routine with my meds-diabetic, mast cell and adissions . Which is keeping me more stable

 

 

 

Needing Physical care

Being adequately housed

 

You have the right to be adeuqately housed for your needs . This can be in social housing, in private let or your own home . An OT has the job of assessing your housing needs .

 

Social housing

In the most part will work with an occupational therapist to do work needed .If your home can not be adapted socali landlorrds have duty to house you adequately .

 

Private Landlords need to agree to have adpataions carried out but if you are on benefits.these will be funded.If not then a financial assessment will be carried out .

 

Your own home

owning doesn't mean you wont get adpations funded .If you can't get funding then there are charities which assist in funding access adapataions .

 

 

Mobility/care Equipment -Buy, new or used or by lease

 

In the UK you can hire wheelchairs form the Red Cross for set periods of time. These chairs are older and well used . So may not be practical for pushing a larger person about all day.

 

There are several wheelchair hire companies .

 

With DLA mobility allowance you can buy a manual wheelcair, electric wheelchair, scooter or car on a 3 year lease agreement .

 

You can buy new or second-hand wheelchairs, power wheelchairs and scooters from mobility companies. They offer servicing on all products,

scooters and wheelchairs come in different sizes to meet different needs from being compact and being loaded easily into a normal car or being larger and road legal

 

New ways to describe myself

 

With my life having chnaged and becoming disabled I have had to find new ways to describe myself. The first time I was called an ex-nurse floored me . I knew things had chnaged but it was still hard hearing it

 

The word disabled is not favoured by many with physical restrictions .I like it.I use it to describe not all of me but the parts of me that need extra care -different care to another 37 year old woman .

 

Many prefer differently abled or other terms.This is avery personal preference .Its noticed that in America hanicaped is used as term, which is no longer used in the UK by disabled people or those who work with them .

 

I absolutely hate the -" does she wanta cup of tea" thing.I know its not meant badly but because the person asking doesnt know if I can communicate . So i pre - empt it to a degree by speaking first. I also look people directly in the eye and smile .Which takes away some of the discomfort of them not wanting to stare so putting their head down .

 

I am me on wheels ;-)

 

I wanted to say just again .i was using it alot.But have conciously banned it. this allows me to express my feelings . I was immediatly telling people why i was ill/in a wheelchair -justifying myself . I have also conciously stopped doing this.It was about being in the transition phase. Not the old me. Not the new me . So i didnt know who I am now . I do now .

Support groups

When I became ill , I wasn't inclined towards support groups . I was wary of my whole life becoming my illness .

 

As I have gone on I felt I wanted to know if there were other people out there with my problems as I had never seen it in apatient and I felt like afreak of medicine becuase no one could find out what was wrong with me .

 

The diagnositic process was so stressful esp with continuing to get iller and iller .

 

My first encounter with someone like me was in august 09, on an allergy focussed website .i relaised then that my problems were more complex . I read what i could find online and in march 10 I found a definition of idiopathic anaphylaxis .This was the first point that my condition had a name .

 

Some on the allergy forum mentioned a yahoo group for idiopathic anaphylaxis and in May 10. Nearly 2 years after becoming unwell - I met someone like me who knew what was happeing to me . Over time this group and couple of others have provided valuable support for me .

 

Froma disability point of veiw I reached the point that I wanted to be a part of a new community .In Jan 10.I begaan a day centre which was very good for me.It gave me struture to my week .Unfortunately I was still really unwell so didnt get there consisatntly .

 

In Sept 10, I moved areas and there isnt a suitable day centre here for me.The only one is ina village hall with abar and the alchol fumes in the envirionment made it a no .

 

So cabin fver can really be an issue , More on medium days. On bed days, im in bed .On good days , im with it and able to do things .But on a run of medium days . I am unable to do much or concentrate , but am able to think and that can get me a bit down. As soon as I have better day it feels easier

 

Hobbies

When I was in bed most of the time - if visitors came and I could get out of bed and take 3 steps- i would get them to take me out-to the park or the local shops . This helped . It also meant tha if i was tring -normally after 15minutes I could say and id be home in 5 minutes

 

Over time I have developed things I can do from my rise and recline chair . Be online ;-0) . Recantly I have had ramps fitted at my home which has opened the garden for me .I am enjoying this.I need help and can only do hand things, like planting .But with help ( freinds ) I have tomato plants grown from seed and runner bean plants out .Flowers ready for the flower beds and salad growing in various containers .

 

For me , its been about adapting . Finding ways to do the things I want to .

 

I miss girlie nights out and kareoke - But I am enjoying my life. I can read and love novels  .I love music and have you tube sessions and have CD's close at hand .

 

I use my energy wisely. If I have busy day - I pay for it - with a day or 2 in bed . But sometimes its worth it

 

New ways to describe myself (yourself )

Insert body text here ...

Mast cell /masto sucks - please all who agree give the Masto mutant cry -BWAHAHAHHHAH

A Pontssaa original statement

To see Pontssaa - Leslie's original work on yo tube press the link . She has Systemic Masto

 

This site will have its own youtube channel soon ............

Energy levels

My energy levels are different to how they used to be .i have to use my energy wisely and when its gone its gone .i have to use so much energy in everyday tasks- washing, dressing, concentarting that i often have very liitle left . Also triggers can make me so fatigued I cna hardly hold my head up in seconds .

 

Some see theire energy 9in longterm illness ) as abol -which has finite number of sppoon fulls of energy .So choosing were to use them has to be done wisely .Sometimes anap will replnish the bowl but most often it replenishes to staying awake, not anactivity level .

 

It is noted that many of us have type A perosnilites-very driven and in control - so control being taken away feels absolutely devisating to us . especially when we find we cnat do things we used to .

 

This brings about several respnses

 

1) stand against -the obsticle -thing you cant do and have your nose to it so all you can see is the wall .In frustartion, youll head butt it to make it move

 

2) You will continue to convice yourself your body can cope the dealing with the obsticle wether it be physical ,emotional or interlectual as it did before -so you will continue to attempt to climb over continually - getting ehxuated - ending up in bed or in anaphylaxis - as a reaction follows aoverdone it day .You ignore all any any signs your body is giving you- until it akes over .

 

i have thsi as an arguemnt going on betwen my body and my brain - brain - you can do it-just stick at it, push yourself

body -ive reached my limit please stop sending signals to amke me do stuff

No- you just need to keep going

Body -im seriously struggling i need to stop - flushing, sudden fatigue

Brain No keep going

body -i wanred you -puts out hit of histamine

Brain - im confussed fobble, wobble bobble -signal to rest and sit down or callapse

Body- i warned you

 

You would think when this happens you'd go-ok body im going to listen now -

alas NO

It took me having anurse in hospital to tell me to stop it -for me to begin listening to my body and do as I am told .

 

Why ?

1 ) Denail -wanting things to be the same

 

2 ) Being stubborn

 

3 ) Pride /embaressment

 

4) Being stuck - i felt let down by my body and I couldn't cope with it being in control

 

5) We confusse acceptance of our sitaution with giving up.ina society focussed on achieving this cna be very hard to bear .For both men and woman .men feel it in relation to rpotecting and providing for their famailies /women in relation to there nurturing role and feeling "bad mothers "

 

At what point we relaise and begin listening to our bodies is absolutely individual and backsliding is a fact .

 

For me personally ,Its een abou the loss of indepandnace and about not being ale to rpotc my childre from it..i want to be thre for my family and freinds but now I hae to decidethe bs ay to bhere without compromising my health

 

Being Normal

Pressure to conform -to be normal was most evident amounts teenagers , but now it is a huge part of being an age from in juniours and having the new barbie or 35 and having abusy social life and perfect familty

 

With alongterm illness I have had to redinfine my normal .i stopped saying it for awhile to stop myself constantly comparing myself to others , looking back and feeling afialure .

 

i had to redine my goals and what is normal for me .it struck me -year 2 that i was begnning to accept anew normal .of dialy symptoms and anaphylaxis and I could cope with that .

 

I knew I needing to accept the chnage in me to allow myself to be happy with my achievemants and abilities .

 

The feelings over what you can't now do are overwhlmingly sad.thats normal ;-)

 

The thing for me was to stop looking at everyone else and enjoy my life -yes its different but that doesn't mean its bad . By doing this I was no longer missing my life by comapring myself .

 

Part of not feeling normal was not having life plans or achieving what i planned before .So i made new ones .when i was in bed these included - let myself be on bad days and have abath every other day . things improved I have set myself goals I cna achieve xx otherwise your doomed to failure and that is pointless.

 

be kind to yourself -we cna be so critical of ourselves . often far more than others are .

 

Not being able to work was a very big hit for me .i felt like my adult life had all been taken away from me . now ima bit weller i fill my time and enjoy my life. ork is with hope in my back pocket as something I would like but am not going to torture myself over -beleive me I did torutre myself .i hated having to recive state benfits.i still wish i didnt have to but i need aroof over my head and to eat .

 

We can push ourselves and make ourselves iller ,even to anaphylaxis

or

we can say a person with another long term illness wouldnt ecpect to lead atypically normal life and we shouldn't either .in doing so stop feeling uilty, a fialure , not aproper man , a bad mum , having let your children ,freinds ,fmaily down .

and

it back and watch the flowers blosm and be there to watch our children and grandchildren grow and adapt to do the things we want to .

 

 

 

 

pacing is a way to manage your life and not make yourself iller .

The idea traditionally is to expend the same amount of energy each day -In mast cell this is impossible becuase our energy and fatigue levels vary .

 

So I adpated it .

 

To use the bowl of energy and think about each spponful

 

Be honest about what you can achieve

 

Don't plan ahead -or expct plans to be fluid

 

Lsten to your body and learn your flovour of mast cell

 

By doing this I hae enabled myself to get the most from each day.this cna be sleeping or in my chair resting back watching afilm or typing if my arms arent too painful .

 

It has also helped those around me .i encourage them to ask me how im feeling physicaaly and mentally as these cna be very different .I may be rough physically with reactions or constant symptoms but be quite happy in myself or vice versa.

 

i would say, make no assumptions -just ask me

 

In mysefl I hate assumptions .They cna make me very angry .but i dont mind genuine questions . if im rough i try not to take it out on those around me esp swearing as I only swear when im relally upset but it means I have to apologise when the situation wasnt my fault .

 

Also assumptions made me hold back and be silent .

Adapted Pacing

Managing my personal and physical stress

A major area of adaption for me has been stress and avioding it and those who bring ahuge amount of emotional stress to me . i can and do have anaphylaxis from stress and by avioding it as much as possible i do a whole lot better .

 

I find it hard to say no  -found it hard >now saying no is self preservation . before i would feel i was letting people down if I said NO but now I know its necessary

Types of stress i find cause most problems

 

1) Emotional - feeling hurt or let down

2) Being unfairly criticised -esp without an ability to respond

3) My persoanl fianancial security

4) huge emotional upheaval

5) being rushed as this will make be go blue then flush

6) situations were previously before IA ,i would have had it sorted out but im still having propblems because others havent delt with it .

7) Appointments esp with doctors

 

Physical stress can also have the same effects on me-

1) infections

2) hormones

3) excericse = vv slo walking =swelling of abdomen and legs -I fill with fluid from the bottom up

4) heat

5) my other health problems being un controlled

 

I wasn't convinced strss was trigger for me for along time .but then I had a big emotional upheaval and it caused an anaphylaxis So this convinced me about large stressors . for seemingly smaller ones i read back through my book and could clearly see the connection between any stress and increased symptoms .now I know that stress hormones directly activate mast cells.It makes dealing with stressful situations easier and managing the stress of those around me .

 

My hobbies-reading ,gardening, watching TV, and musci all help keep my stress levels as low as possible and allow me to completely switch off from my problems .

 

Becoming suddenly upset is asymptom for me from irriataion to getting angry or crying for no reason .this is an early warning symptom for me .many others report this

 

Not knowing the future and will you get stronger is very worrying .i stopped trying to think longterm-tooscary and felt impossible and now think medium term.it takes away all the what ifs ;-0 and helps you live day to day, hour to hour or moment to moment- whatever that day requires .

Our energy levels tend towards being higher the lat er in the day it gets .Our sleep is also messed with by the Mast cell chemicals -

 

Masto mutants love the night -bwahahahahahah

(A Pontessa orginial )

Creativity within the mast cell community

Many  of the mast cell community are enagaged in creative projects . here i showcase some with referencing and link to others ;-) enjoy .