New Recipe

I’m extremely busy at the moment and haven’t had time to try many new recipes.  However, I wanted to share this simple and very quick ‘bread’ one with you as it’s absolutely gorgeous.

I never again thought I’d eat soft, doughy, bread after going low histamine – it’s hard to get anything to rise with no yeast.  But these honey and oat ‘bread’ slices are scrumptious and lovely with a steaming bowl of soup.  They are made using a scone recipe, but if you eat them still warm from the oven they taste very bread-like.  When they’ve gone cold they taste more like scones, but are none the worse for that!

You can also make them into ‘rolls’ (I slice the rolls in half and use a sandwich filling just as I would with a regular bread roll) and they are freezable.  See the Miscellaneous Section of the Recipe page for further details.

Sisterhood of the World Bloggers Award

Thank you so much A Rainbow at Night for nominating my blog for this award. I am truly honoured you thought of me :-)

Photo of Sisterhood of the World Bloggers Award logo

Rules:

(01) Thank the blogger who nominated you and link back to their site.
(02) Put the award logo on your site.
(03) Answer the questions the tagger has given you.
(04) Nominate ten people, and
(05) Make up ten new questions for those people to answer.

My Questions:

1. What made today special for you?
The fact it’s nearly October and the weather is gorgeous.
Waking up and realizing the awful migraine I had all day yesterday had gone.
Taking my dog for a walk.
A visit from my parents – they rarely come to my house as I visit them every day at theirs.
A scrummy dinner.
Learning I had been nominated for this award :-)
A soak in a hot bath.
Wonderful energy levels (for me!).

2. Why do you blog?
When I was looking for info on MCAD I could find virtually nothing, so I wanted to help others in the same boat.

Also, after being ill for 20 years my nearest and dearest are bored sick of the whole “illness” thing, but it’s a huge part of my life so I needed an outlet for my thoughts and feelings about my situation.

3. What is one thing you wish people understood about you?
I stopped caring what people thought of me some years ago – I don’t have the energy.  If I’m misunderstood, or someone doesn’t like me, as long as I believe in my actions and myself it’s enough for me.

4. Which place that you’ve visited is your favourite?
I’ve travelled all round the world working on a cruise liner and couldn’t wait to come back to the Lake District.  It’s home.

5. Do you have a phrase, mantra, or quote that gets you through those exceptionally-difficult days?
“This too shall pass”.
If this were the last day of your life would you be thinking or doing things differently?

6. What are you most proud of/feeling personally accomplished about?
Gosh, tough question!  I am most proud of being a loving, kind and caring daughter, pet parent and friend.

7. Do you have any creative outlets aside from writing?
Photography
Gardening
Cooking
And I used to love to dance

8. What are you doing/have you done to leave this world a better place?
Adopted 5 abandoned animals (2 dogs, 3 cats).
Volunteered for the mental health charity MIND.
Spent 14 years as a volunteer for the national ME charity The 25% ME Group.
Appeared in the media, and have written articles, to raise awareness of severe M.E., Ehlers-Danlos Syndrome and MCAD.  I also took part in the Voices from the Shadows book project and the CHROME research database.
Volunteer several hours of my time each month to put together a 40 page church newsletter.
Crochet garments for AIDS orphans in Africa.
Blog.
Take care of my ill and aging parents.
Created a wild, organic, bird and insect friendly garden from scratch.
 Been making a financial contribution to save Orangutans in Borneo through the Orangutan Protection Foundation for 8 years now.
Renovated 2 old houses.
Been a non-meat eater for over 25 years.
Buy organically, non-animal tested and chemical-free whenever possible.

9. Do you enjoy documentaries?
I usually only watch TV in the evenings when I’m shattered, so I tend to watch programmes which don’t requite high levels of concentration, but in the past month I’ve watched documentaries on history, food production and dog behaviour.

10. Is there a life tip you’d like to share?

  • That ‘stuff’ is unimportant – no-one lies on their deathbed wishing they’d bought the latest iPhone or dusted the lounge more.
  • The only opinion of yourself you need to be concerned with is your own.  If you’re happy with who you are sod everyone else.  If someone doesn’t like you cos you’re fat, thin, pretty, ugly, black, white, gay, straight, disabled, old……..they can jog on.
  • When someone shows you who they are, believe them the first time (I admit it, I stole this from Oprah but it’s such good advice!).
  • It’s OK to not be perfect.
  • Good manners are important.
  • Love doesn’t hurt.
  • Treat yourself as you would a beloved child.

My Nominations

I’m now supposed to nominated 10 bloggers and give them 10 questions to answer, but I’m not going to.   I barely have the time and energy to write my own two blogs, and only follow a handful of other people’s blogs because of my energy restrictions (I’d love to read more blogs, but simply can’t).  Most of the blogs I do follow are written by really ill people, and I don’t want to place them under any pressure to take part.  What I’m going to do instead is list 10 blogs I either follow or read when I have time so you can visit and check them out:

Rag & Bone Shop of the Heart
Musings of a Dysautonomiac
Our Life with Ehlers Danlos Syndrome
Elle & The Auto Gnome (a blog on Complex Regional Pain Syndrome, Dysautonoma and Hypermobility)
Adventures at Run A Muck Ranch (this amazing couple have 13 rescue dogs, some with complex health problems, and 2 rescue horses – OMG!)
Dead Men Don’t Snore (a blog on severe ME)
Divorced, Diseased & Dangerous (a blog on Lyme Disease and M.E.)
Nutritiously Natasha (who uses a plant based diet to treat her MCAD, EDS & POTS)
Fatigue Doctor (a new blog written by a Physician with CFS)
5 Kids with Disabilities

 

Relapses

When I was severely affected by M.E. I didn’t have relapses.  I was just sick every second of every day.  Some days were worse than others, but on the whole I was so ill I felt like I was dying and didn’t know how I would make it through the next hour let alone an entire day.

After about 6 years of being almost totally bedridden I began to start making improvements.  They were so small at first I didn’t really notice them, but eventually I realized I was clawing my way up the greasy pole and by year 10 I no longer felt I was severely affected by M.E. and changed my status to moderate.  Now 20 years on, although still moderately affected, I’m usually very stable and only have a symptom flare if I’ve seriously over-done it, or get a cold or other viral infection.

My improvement hasn’t been a one way street however.  I’ve had my share of relapses, where one minute I’d be well enough to get dressed, make meals, drive, use the computer, speak on the phone and watch as much TV as I liked………….. and the next minute I’d be curled in a ball, deathly white, shaking, freezing, sweating, puking, with the world spinning, the slightest sound piercing my head like a knife, unable to rest let alone sleep, speech slurred, brain poisoned, and with my whole body wracked with fiery pain.

Relapses are absolutely terrifying because you don’t know if you’re ever going to come out of them.  I sometimes used to think I’d prefer to just be sick all the time like I used to be, rather than have a glimpse of a better life only for it to be snatched away again.  The physical symptoms were bad enough but the accompanying emotions were worse: paralysing fear, heart-palpitating panic, tidal waves of self-pitying tears, deep dark never-ending nights and overwhelming depression.  Suicide during these times took over my every waking thought as I simply didn’t think I had the strength to get through another unrelentingly hellish day.

Usually I could pinpoint my relapses to a specific event.  For example, I had a 3 minute chiropracty appointment for my back pain and knew within 10 minutes of leaving the office I was having a major relapse.  That time I ended up being blue-lighted by ambulance in the middle of the night as it was thought I was going into heart failure and it took 9 months for me to return to my pre-chiropracty-appointment self.  Another relapse occurred after having cranial osteopathy, which put me in bed for 3 months in a semi-coma.  And then there was my attempt at simple yoga breathing sitting quietly cross-legged on my bedroom floor, which put me in the neurological rehabilitation unit of my local hospital for 3 weeks with seizures, followed by a year long relapse during which time I could barely speak or stand.  Much as my current homeostasis sucks, all hell breaks loose if I try to change it which is why I totally ignore all the well meaning advice given to me to try this supplement or that drug or some other therapy.

The most terrifying relapses were, however, those for which no trigger could be identified.  I’d feel myself sliding downhill, totally unable to stop the decline, until one morning I’d wake feeling like someone had overdosed me on chemotherapy then beat me with a truncheon while I slept.  Every time this happened I felt like I simply couldn’t go through it again.  And every time I survived.  I AM A WARRIOR who has triumphed in battles no-one should ever be asked to fight.

As I slowly, slowly became stronger (and stopped doing daft things like trying acupuncture or Echinacea) my relapses became less potent.  I still had them, but they were much less severe and of much shorter duration.  My last serious relapse was 4 years ago and I bounced back in about 8 weeks, rather than the 8 months it used to take.  I still live every day with the fear that I’ll relapse again and this time I might get stuck there permanently, but that only gives me an added incentive to seize the day, every day,  and do as much as I can to live my life to the full while I have the chance – which is something we should all aim to do, as none of us know what’s around the next corner.

My friend and follow blogger Elizabeth Milo is currently having a really serious and scary relapse.  I’ve been there……….many times………and my heart is just full of empathy, understanding and love for her.  I’m sure she’s terrified she’ll never get better, but I have absolute faith it is just a set-back and she will absolutely pull out of it.  This song is for you EM:

 

 

 

Tooth Extraction – 1 week on

Soooo, it’s been 8 days now since I had my upper molar out. It’s not been the most fun week of my life but I’m incredibly thankful I’ve had no complications, such as the dreaded dry socket or any infection.

ME-wise, the extraction really knocked me about for 3 days and I slept a lot and felt very fluey, but I was a good girl and did nothing but rest and miraculously I perked up on day 4 like nothing had happened :-) .

Mast cell wise I definitely had a small flare, sneezing and itching like it was going out of  fashion.  Within hours of the procedure my tongue also developed a disgusting thick yellow coating, which only went when the bruising and swelling resolved on about day 5 (I usually wake with a white coating on my tongue which I scrape off every day, but nothing near as yukky as this).  No idea what it was all about, but definitely seems to be some kind of immune-related symptom (usually tongues are linked to the stomach, but to come on so suddenly only hours after the extraction a stomach-related explanation simply doesn’t fit).

Pain-wise this week hasn’t been a bundle of laughs.  If I could have taken painkillers it would have been bearable, but without drugs the pain was intense for a good 3 days and even now the whole of that side of my face is sore.  I’m fairly sure my already painful and subluxing jaw was damaged during the procedure and is causing me as many problems as the actual extraction site.  Even my lower teeth have been painful and achy, and my cheek bone which contained the roots of the molar is still very sore and tender to the touch.

My stitches are still in, though should be dissolving in the next 3 days – if not, I’ll have to pop back to hospital and have them physically removed.  I really don’t think the extraction site will heal properly until the stitches, which are really irritating my gum, have gone.

I had significant swelling and bruising on my face, neither of which I was warned about or prepared for.  At one stage I really did look like someone had clobbered me!  It was 6 days before both the bruising and swelling disappeared, though my gum still feels swollen and bruised internally.  I do take forever to heal from things, and really don’t think I’ll be back to normal or able to eat on that side of my mouth for several weeks yet.  Again, I’m sure if I could have taken some ibuprofen to help the inflammation it wouldn’t have been nearly so bad.  Instead I had to make do with spending half the first 3 days lying on an ice pack freezing my bits off ;-) .

My biggest fear is that some kind of regional pain syndrome develops, as currently all my upper and lower teeth on the right side of my face are aching and painful – quite why my lower teeth should be sore is flummoxing me!

I still can’t eat hard foods, like toast or biscuits, but at least am eating soft things OK and the nausea has gone.

On the whole I wouldn’t look forward to having it done again any time soon, but if I ever did need another extraction I wouldn’t be concerned.

On a different topic, I now have a physiotherapy appointment for my hip…………in a months time *sigh*.  If I’d been happy to see any old physio I could have had something sooner, but it needs to be the senior Rheumatology woman I saw last year who at least has some knowledge of EDS and who I have faith in.  In the meantime I’ll just continue to hobble stiffly around yelling “for FUCKS sake!” every time my joint pops out and a searing pain shoots down my leg ;-)

Frankenfoods – Part 2

Following on from my first post on this subject, a reader of my blog rightly pointed out that the reason most people reach for convenience foods, rather than making their own from scratch, is that making all your own food simply takes up too much time.  I couldn’t agree more.  I spend two entire mornings every week making food to put in the freezer and trying out new recipes, and a further 1-2 hours every day cooking.  It’s exhausting, particularly when you’re ill, in pain, have problems standing and have very limited energy.  I have no idea how people who work would fit it all in!  And thereby comes the crunch.

On the whole, women have only been in the workplace full-time since the war.  Before that, a woman’s job was to run a home and rear children and it took up every second.  My Nan cooked for 9 people every day of her life on a black lead range which used coal.  She didn’t have a fridge let alone a freezer, so food was fresh every day (she made all her own bread, pastry, gravies, sauces, jams, even toffee).  My family were poor, so my Nan worked part-time cleaning richer people’s houses, but she simply would never have had the time to work a 40 hour week outside the home as modern women do now.

She also didn’t have the leisure time we expect nowadays.  She didn’t play with her kids, or take them to Alton Towers.  They weren’t ferried by car to Brownies, or after-school hockey practice.  The children amused themselves while my Nan got on with the never-ending job of cooking, washing up, doing laundry (on an open fire, starting at 5am on a Monday morning and taking the entire day) and keeping the house clean (which wasn’t a huge job, as it had one room upstairs, one room downstairs and a lean-to which contained a sink – the loo was at the bottom of the garden and bathing was done once a week in a tin bath in front of the fire).  Her evenings were spent knitting clothes for her brood, as she couldn’t afford to buy jumpers from a shop.  Dunno about you, but I’m glad we now have automatic washing machines, tumble dryers, dishwashers, fridges, freezers, showers, proper cookers and online shopping at Matalan.  Which, one would think, would give us bags more time……….only it hasn’t.  Well, actually, it has – we just use this spare time in ways my Nan would never have dreamt of, ie going to the Gym, waiting outside dance class in the car at 8 o’clock at night to drive our kids home, and spending weekends going ten pin bowling, or swimming, or spending hours and hours and hours on our iPads or watching the telly.

On the flip side, for those of you who are married expectations from husbands and fathers have altered dramatically.  When both parents go out to work it’s only right that partners take on an equal share of the domestic chores and child rearing.  At least, that’s how it’s supposed to go, but when I speak to my married friends it sadly rarely does and women still take on the majority share of both child rearing and housework.

We really cannot have it all.  We can’t have careers, leisure time, families and look after ourselves well – there aren’t enough hours in the day.

I don’t have a choice about my diet.  If I eat high histamine foods I go into anaphylactic shock, so cooking is a number one priority for me.  When I look at how I’m going to spend my week (which I do on a weekend so that I can prepare for what’s in store and make sure I rest and plan my energy) cooking is the first thing I put on my schedule.  Followed by appointments (either for me, my Mum and now my Dad).  Followed by walking my dog.  Followed by rest.  Cleaning the house, bathing and leisure time make the cut now and again, but certainly aren’t high on my list of priorities.  Luckily for me I don’t have children – I simply wouldn’t have coped, particularly when I was bedridden for all those years.  People who are ill yet still have families to care for deserve a medal – I just don’t know how they do it.

The solution for me has been to prioritize, which means I don’t have the time or energy to do many of the things I’d like to.  I don’t even have the time or energy to do many of the things I should do, like wash my hair (which is why wearing wigs is a God send!) or change my bed sheets.  I had to let go of the life I expected for myself and come to terms with the life I’m actually able to live.  When I was bedridden I had to fight incredibly hard to obtain welfare benefits which enabled me to employ people to help me in my home.  There was no way I could have cooked for myself then and I’m grateful every day that I’m now able to make my own meals.

This is how I manage my life.  Priorities will be different for all of us, depending on our health, finances, how much help we receive and our family circumstances.  But in order to feed ourselves well, something has to give.

Tooth Extraction

After waiting nearly a month, I finally saw my GP on Monday about my hip.  She thinks I have trochanteric pain syndrome (formerly known as trochanteric bursitis), which is a relief in a way as I was concerned I’d started with arthritis.  I’ve been told to rest more (which I knew anyway, but have been ignoring as usual!) and to ice the hip for 10 mins every 4 hours, followed by a good dollop of Ibuleve gel as I can’t take anti-inflammatories or pain killers.  She’s also going to re-refer me to the Rheumatology physio at the hospital, who I saw last year and who is sympathetic and has some knowledge of EDS, for a second opinion.  It might be that the physio requests an x-ray just to check what’s actually going on, so I’ll just have to wait and see. The only thing that bothers me is that the physio is really busy, and I might have to wait months for my appt by which time the damned hip will either be tons better or tons worse.  The bloody thing is really irksome this week and I can’t get comfortable no matter what I do.

Yesterday was D-day for my tooth extraction though I wasn’t overly concerned about it as I’m fairly chilled about these things on the whole.  My Dad came with me as I wasn’t allowed to drive the 30 miles home and we were both astonished that I was taken in at 10.30am and was back out of recovery at 11.10am – they don’t hang about!!

I had 6 injections: didn’t feel any of the front 4, but the 2 I had in the roof of my mouth really weren’t pleasant and made me bleed like a stuck pig.  My mouth was numb in seconds and the procedure started straight away.  The tooth came out relatively easily (well, with the doctor leaning on my head with his whole body weight and tugging like he was getting a tight cork out of a reluctant bottle) and thank heavens the sinus cavity remained intact and the tooth next door wasn’t dislodged (both complications I’d been warned about).  Probably due to my thin skin I did need 3 stitches though, which to be honest I wasn’t expecting, and he put a dissolvable sponge plug in as I bled a fair bit.  The procedure didn’t hurt in any way and the worst part of the whole thing is that the local anaesthetic made my throat feel swollen and I gagged every time I swallowed, which made me feel pretty nauseous.

Everything changed in the next 2 hours as the anaesthetic wore off.  I was in serious pain and my face swelled up like a hamster.  I also felt like I’d been hit by a truck: completely exhausted, ached all over, awful brain fog and like every cell in my body had been sucked of energy.  In other words, very MEish.

I took the dog out on my scooter, then went to bed and slept on and off from 4pm until 6am this morning.  I think I’m going to be spending the next week basically in bed recovering.

I have to now use a warm salt mouthwash every 2 hours for the next 5-7 days to prevent infection and help the wound heal.  The stitches will dissolve on their own after 7-10 days.  I look ridiculous, as I have a stick-on ice gel pad on my face to help the swelling and lessen the pain, but it’s all I could think of and does seem to help.

I could only eat/drink through a straw yesterday, but this morning I’ve managed some Cornflakes with warm milk and have got some mushroom soup I pre-made for lunch.  I still feel really sick though so food isn’t high on my agenda.

I’ve definitely had a mast cell flare.  I’ve done nothing but sneeze this morning and my skin is itching all over (I’ve scratched one finger so much the skin has come off, so it’s now covered in germolene and a plaster!).  My back is also killing me :-/  To be expected though I guess.

I’m still in quite a lot of pain today but nothing like the severe pain of yesterday.  I am still very MEish though and can barely keep my eyes open or put one foot past the other – I’m hoping by resting well I’ll avoid a relapse.  I also hope the recovery is problem-free and no infection develops.  If I go quiet in the coming week I’m just recovering and not up to being online.

Invisible Illness Week

In the past few days, some of my fabulous fellow bloggers have been taking part in Invisible Illness Week and completing a questionnaire about their diseases.  I’ve loved reading about other people’s experiences of living with chronic and invisible illness but didn’t have the time or energy to post my own questionnaire, which I know you’ll all understand.  The week officially finished yesterday, so I’m late to the party, but I’m hoping there’s still some wine and a piece of dried up quiche left ;-)

30 THINGS ABOUT MY ILLNESS

1. The illness I live with is:

Ehlers-Danlos Syndrome (hypermobile type)

Mast Cell Activation Disorder

Histamine Intolerance

Myalgic Encephalomyelitis (M.E.)

2. I was diagnosed with it in the year:

M.E. in 1994

EDS in 2010

HIT and MCAD in 2013

3. But I had symptoms since:

Birth for EDS and MCAD.

1992 for M.E.

4. The biggest adjustment I’ve had to make is:

Learning to define myself as a human being, not as a human do-ing.

5. Most people assume:

That I will eventually get better.

6. The hardest part about mornings are:

My nervous system gymnastics as my body wakes for the day.  Pins & needles in my bottom are no fun, and my heart flip flopping all over the place sets up a fight/flight reaction.  I have to remind myself every day to just breathe through it, which usually helps with the nausea.

7. My favorite medical TV show is:

I don’t watch medical shows, as they’re full of caring doctors and nurses which doesn’t really match my own shitty experiences!  I’m addicted to Teen Mom, shhhhh don’t tell anyone ;-)

8. A gadget I couldn’t live without is:

My laptop.  I live 7 miles from the nearest shop and am often stuck in bed feeling ill, so I might starve to death without the internet and online grocery shopping.  I couldn’t live without my telephone either though!

9. The hardest part about nights are:

My nervous system unwinding for the day!  Again with the flippy floppy heartbeats, and a feeling in my brain like I’m falling off a tall building over and over again.  Also the stillness and not having any distractions – it makes me have to face my sick body, whereas during the day I’m busy enough that I can ignore my symptoms.

10. Each day I take ? pills & vitamins

I would love to take more drugs, but because of my MCAD I am almost totally drug allergic :-(  I currently take 4 teaspoons of liquid meds, plus 2 pills, daily – it’ not halfway near enough to control any of my symptoms.

11. Regarding alternative treatments I:

have tried them all and then some.  99% of them either didn’t work, or made me ten times worse.  I now don’t bother with any of them but think it’s something most people have to try as part of their journey.

12. If I had to choose between an invisible illness or visible I would choose:

Invisible.  Even though at times I wish the general public knew what I went through every day so they could be more helpful and empathetic, I prefer that I can pretend to be ‘normal’ and fit in.  My private life is private, and I prefer not to have my health on display to the world and be asked personal and intimate questions about it by total strangers.

13. Regarding working and career:

I haven’t been in paid employment for 20 years.  However, no matter how sick I’ve ever been I’ve always done volunteer work from my bed.  I was so grateful for the generosity of spirit shown by volunteers of support groups etc. when I first became ill that to not share my vast experience of living with ill health with others seeking answers would be unthinkable to me.  I also volunteer for AIDS orphans in Africa (no matter how hard my life is, theirs is so much harder), as well as having an adopted Orangutan in Borneo which I support financially despite being on a low income.  My rescue animals, over the years, have always given me a reason to get out of bed every day.  Everyone needs to have a purpose.

14. People would be surprised to know:

How lonely I am.  I hide it well.

15. The hardest thing to accept about my new reality has been:

The lack of choice and options.  If ever I’ve had a problem in the past I’ve just fixed it.  Didn’t like my job – get a new one.  Wanted to make new friends – join a club.  But now my options are severely limited and it’s hard to accept I’m no longer in total control.

16. Something I never thought I could do with my illness that I did was:

Get any better!  I was bedridden with M.E. for nearly 10 years and now I’m not :-)

17. The commercials about my illness:

We thankfully don’t have health commercials in the UK – I hate the very idea!

18. Something I really miss doing since I was diagnosed is:

I don’t know where to start!  Drinking.  Going to the cinema.  Dancing.  Staying up late.  Sleeping in late.  Gardening.  Going on holiday.  Reading for hours on end.  Having girlie chats and laughs.  Wearing makeup and high heels.  Having a social life basically.

19. It was really hard to have to give up:

Pain killers.  I miss them.  A LOT.

Plus I never thought I’d miss a tin of chopped tomatoes as much as I do.  Giving them up has been weirdly life altering!

20. A new hobby I have taken up since my diagnosis is:

Photography.  If someone had told me when I was 20 I would become a wildlife photographer I would have said “shoot me now and put me out of my misery” ;-)  But I really enjoy it.

21. If I could have one day of feeling normal again I would:

Travel.  Eat and drink whatever I wanted.  And end the day by sleeping for 9 hours straight.

22. My illness has taught me:

I am not going to list my blessings – there is nothing good about being this sick.  My biggest lesson has been that I’m totally alone and have received virtually no help or support, which I’ve found soul destroying and has made me bitter, sad and angry.

23. Want to know a secret? One thing people say that gets under my skin is:

Healthy people telling me how tired they are (after doing a 40 hour working week, then climbing a mountain for fun), then saying “well, you know what it’s like”.   Seriously…….WTF***?!!!

Also people who diagnose me with all sorts of diseases over the internet despite the fact they have no medical qualifications, have never met me or seen my medical notes.  They drive me nuts.

24. But I love it when people:

Tell me that my blog, or an article I’ve written, has helped them :-)

25. My favorite motto, scripture, quote that gets me through tough times is:

If today were the last day of your life, would you feel differently?  It changes my perception in a huge way.

26. When someone is diagnosed I’d like to tell them:

Not to waste precious years, and thousands of pounds/dollars, chasing a cure.  There isn’t one.  I do tell people this but they ignore me, because trying to get better is part and parcel of the journey we all have to take before we can finally accept we’re chronically ill.

27. Something that has surprised me about living with an illness is:

How much everyone I know, even people who know me well, ignore my illnesses.  Which in some ways is great, and in other ways is not.

28. The nicest thing someone did for me when I wasn’t feeling well was:

I have so little practical support I had to think long and hard about this question.  One of the nicest things anyone has ever offered to do for me was to pay for a hotel so that I could go and see my consultant down in London and not have to travel there and back on the same day.  This person was a total stranger who reads my blog and, although I didn’t take the offer up, I was just incredibly touched that she would offer financial help when none of my friends or family had done so.

I was also very moved that new friends offered to text me while on the train to London last year, just to keep me company.  I was touched they’d realized how alone I felt and how difficult the journey would be for me and their texts made me feel cared for.

29. I’m involved with Invisible Illness Week because:

It’s important to know we’re not alone.

30. The fact that you read this list makes me feel:

Amazed you’ve read this far!  Grateful that you care enough to’ve read this far ;-)