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Michelle Writing.

I realised today that I have spent so long trying to minimise my illness that I have lost sight of what it really is and how sick I actually am.   Why I’ve chosen this path is complex.  I’m not completely sure I can identify all the reasons why I do it, but I’ll try.

I know part of it is an attempt to shake my fists at the universe and say, “You can’t beat me”.  To tell my illness that it doesn’t own me and that I am still me under my compression hose and gallons of water.  You kinda need to do this to survive.  It’s hard to keep getting out of bed each morning unless a part of you says I can do this, no matter what the reality of the situation.

I know part of it is that I am sick of being the token ‘sick’ person.  I’m over it.  I don’t want people to know how ill I am.  I wan them to see me rather than dysautonomia.

I know part of it is my strong aversion to pity.  I would rather kill myself putting on my ‘well’ mask, pushing myself to the limits and suffering for the next week, rather than get the pity look or comments.

I know part of it is that my ‘well’ baseline is now so much lower than those without chronic illness. So it takes a lot for me to register a ‘sick’ day.

I know that symptoms that were so strange and frightening at the start are like white noise now.  I’m permanently dizzy.  I’ve had nearly 4 years of dizzy.  In fact I don’t really remember being non-dizzy anymore.  If I didn’t feel nauseous, I thnk I may feel like I’ve lost a part of myself (not that I’m not willing to give it a go).

I know part of it is that I don’t look sick most of the time.  As we have all experienced people are happy to tell us we don’t look ill.  They might as well scream “LIAR” each time they say it.

I know part of it is that I used to work in a hospital.  I know what ‘real’ sick looks like.  For part of my job I worked in palliative care.  I know what those patients and their families went through and, my illness seems so petty in comparison.  Basically I feel guilty for saying I am sick.

I know part of it is I can’t stand people who wallow in their illness.  Who roll around is every bit of pain and discomfort and seem to enjoy the sick role. A while back I was on a forum and the topic was related to severity of symptoms.  What began as a a simple exchange of what each person was experiencing, became a game of oneupmanship.   Certain posters tried to out sick each other.  Bizarre.  Certainly not a game I wish to win.

I know part of it is that many of those posters said “I am super ill and yet I still manage to work, volunteer, raise my family, work on the PTA, cure world hunger, organise peace in the Middle East, and solve global warming, those who say they can’t have a bad attitude and are lazy”.  Logically I know they are tossers and would most likely be in every aspect of their life, but it still makes me feel less.  So I fight through to try and do things that is a moment of clarity are far beyond me and fail miserably.  I can’t even be sick right!

I know part of it is that growing up I was always taught to hide my true feelings.  When I was ill as a child I was told I was a hypochondriac and to harden up. If things were bad we hid them and in turn hid ourselves.  I was raised in a family where only the weak mentioned they were feeling unwell.

I know part of it is that doctor who told me it was all in my head.  I know he’s wrong, but I still have that nagging little voice saying “you don’t have an illness you are just a nutter”.  Stupid I know.

I can sit back, put my psychologist logical hat on, sit my illogical emotional self on the couch and ask that part of me to tell me about my mother (oh self lets not go there thats years of therapy) and pull apart my illogical reasoning.  But often we are driven by those little voices that tell us how we ‘should’ behave.  I hate those voices with a passion but I still hold them close, they are my frenemies and it is hard to part with them.

The other day I had a bit of a reality check.  I wrote a post about the good old ‘simple faint‘, on my personal blog.  Now for those of us who experence this or even pre-syncope on a regular basis it just becomes part of the daily existance.  But I was shocked by the comments.  People were truly horrified about the whole experience.  Now I’ve had similar comments before about posts, where people wish for me to get better, but never the shock aspect.

I was a bit taken aback.

Am I really that sick?

Am I really experiencing something so horrible?

I mean I know it’s not pleasant but it’s part and parcel of living with dysautonomia.

Then it stuck me I’ve been living with this so long that I’ve lost sight of what I am going through.   My normal is so skewed from reality that I have lost the ability to really see my dysautonomia.  If one of my loved ones was going through what I described I would be horrified.  I would never judge them like I judge myself.

I realised that I don’t have to deny my illness to be able to live with it.  It’s not about rising above it necessarily, but accepting it for what it is, to find it’s place in the big scheme of things.  I don’t need to minimise it to make it bearable,  that only increases the load I have to bear.  I’m going to bring it out of the shadows, not for anyone else, but for me.  Admitting it does not make me weak,  self-indulgent or  all the other negative names I can throw my way.  It’s okay for me to be sick.

Now I’m not saying those little voices wont keep getting their way on occasion, I’m realistic enough to know that.  But I also know that’s part of the process.  It doesn’t have to be an all or nothing. It’s the journey to find a balance between the two.

They say that part of the solution is admitting you have a problem so I’m going to start:

“Hi my name is Michelle and I really am sick.  And that’s okay”.

🙂

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Lyla Posting……

There are times where it feels as though my world is crashing down on me and I’m being pulled in about 5 different directions. My heart is racing, chest pounding, dizzy, vision blurry, palms sweaty and I feel like screaming.

I’ve found out that putting my headphones on and jamming out to my ipod has helped me immensely during these difficult times. It gives me “ME” time!!! “ME” time is very important when you are dealing with the stressers of a dysautonomia life. Appointments, parents, friends, strangers,family and health care workers are constantly asking questions/have expectations or asking for you to be somewhere or do something.  When I’m just spending time with myself, my own thoughts, listening to my favorite music, I’ve figured out that my thoughts and feelings never go towards my disorder, stresssors or negative thougths.

So, I  guess I’m letting everyone know that when you’re going through a rough time, you might want to try to have some “ME” time even if it is 5 minutes. This is avoiding and avoiding doesn’t solve any problems, but it does fix a temporary issue and can help to clear your mind or put it in a more positive space.

Thanks

Don’t you ever forget it!

Laura Posting.

Inspired by Kyli’s post

Regardless of whatever the limitations we have might be- we are worth getting to know. There is a person underneath the illness who deserves to be seen! It might be hard at times for that person to be recognised, but they are there. Perhaps it takes a special kind of person to see that… which is why I am grateful for the good friends (and my boyfriend of course) that I do have. Even if they can never truly understand, at least they can see beyond my illness to the great person that is ME!

So remember- no matter your symptoms, no matter your hardships, no matter what you feel dysautonomia has taken from you- you are still you- and you are still worthy of love, laugher, happiness, joy, friendship and good times. Don’t let it rob you of that.  I know it’s not always easy when the symptoms cause physical and emotional pain. But we are “No Limit Soldiers” if we choose to be. Look out into a world with no boundaries. Focus not on what dysautonomia has taken from you, not at what you can’t do- but at what you can do- with all your courage, your compassion, the unique voice that is yours. Every single one of you makes a difference. Every single one of you matters.  Never forget it.

The only way I can actually survive for a few hours of shopping is to be in a wheelchair, a decision that I do not make lightly as I am never comfortable with it. I feel guilty that I’m using something that wheelchair dependent people rely on, who can’t walk at all.
But I bit the bullet and hired one. I was with my friend Anna, who thankfully stuck by me and when my arms were aching from pushing myself she pushed me around too.

The first reaction I had from people was pity. Obviously nobody knew that I was able to get up and walk around, but that was the worst and most annoying reaction. When we asked to push past in a shop or to get into a lift, it’s like everyone cleared the way as if they didn’t want to touch me or look at me.

The second reaction was of just a pure stressed out shopper! It’s like the woman with the buggy syndrome where they try and push through and everyone gets pissed off because she acts like she owns the street/supermarket aisle/shop floor.
Also people who walk along and suddenly stop for no reason. If you’re walking it’s annoying enough, but when you’re pushing yourself along and have to slam on the brakes and if by chance you hit the back of their legs, then they start having a go!

I am thankful that I do not have spend every day of my life in a wheelchair and I can now see why sometimes people who are disabled get angry and defensive with the general public. They are just ordinary people, leading as much of an ordinary life as they can. They are no less of a human than any of the rest of us and deserve to be treated with respect.

There are some people out there though who are absolutely lovely though. I was in Boots (the pharmacy) and the lift was broken so the security guy got one of their staff to push me all the way round to the service lift and personally took me to where I wanted to be.

Also, I was in Superdrug (another pharmacy type place) and the queueing system by the tills is snaked around but is not wide enough to accommodate a wheelchair. So some random guy just moved the entire display out of the way for me to get round. I did feel very guilty as I could have just got up and walked around, but I was doing my ‘undercover research’ too. I’ve actually written to the shops in question to explain that they are not wheelchair friendly.

There was a moment in Habitat (a homeware shop) where the aisles were so narrow that the wheel knocked a tower of glasses but thankfully it was sturdy enough not to come crashing down!

Since that outing, I’ve been out several times in the wheelchair, it’s actually a great help, especially when I don’t know what I’m going shopping for. If I know that I need something specific from a shop, then I’ll go there and then straight home and I’m ok. But out local shopping mall is massive and just to walk from the bus stop to the entrance is a complete trek! I do try and shop online, but then you end up paying for delivery and waiting days for something. I much prefer to go out and try and feel a bit more normal, by browsing around the shops.

If hiring a wheelchair means that I can stay out for longer and give two fingers up to Pots for the day, then I’m happy. I can’t sit for long at the moment, but when I can I will make the most of it.
Just think that nothing is impossible with Pots, there is almost always a way around things, so don’t ever give up!

Michelle posting

I’ve been sitting here off and on for the past few hours trying to think of a topic to write about. Actually if I’m honest I have been sitting here trying to get my brain to form a single cohesive thought. Never mind making that thought into a sentence. Never mind getting my fingers to move in some sort of coordinated effort on the keyboard to form the words into something tangible. Never mind forgetting how to spell simple words like ‘and’, or even that ‘and’ is a word, or how to use it in a sentence. Brain fog strikes again, and I am lost for words once more.

For me this is perhaps the most annoying and disabling symptom that Dysautonomia has thrown my way. Once upon a time I had a brain, I know I did. I have proof on my study wall. Now I’m starting to think that my brain has made a run for it. I’m pretty sure that it is now sunning itself on a beach in Majorca and drinking margaritas, whilst I sit here lobotomized, pondering the fluff in my navel.

Frustrating doesn’t really begin to explain how this makes me feel. My brain has always been the one thing I had going for me. I could juggle complex information with ease. Be it work, academia or a round of Trivial Pursuit, I had it going on. My career choice, neuropsychology, involves the study of the brain, in particular cognitive abilities. Lordy, that makes me giggle now. Suddenly I have strains of Alanis Morissette’s Ironic, running through my mind. (Brain fog had me calling her Alyssa Marionette for the past ½ hour without even tweaking, sigh).

I specialised in working with the elderly. I wrote protocols for managing delirium. I wrote rehabilitation and management plans for various cognitive deficits. I was the go to girl for the most complex and confusing cases. If someone was violent, or had issues with personal hygiene or body fluids, I was the girl who worked out how to manage the behaviour (hmmm on second thoughts maybe I don’t miss work so much). Now on my bad days I can make some of my ex-patients look like Einstein, and that includes the guy who thought using a metal cheese grater to itch his leg was the logical choice (if nothing else my job was never dull).

I know now that I couldn’t go back to the work I was doing. In many respects I don’t know if I would trust myself enough to get it right. The responsibility and consequences involved mean you have to be permanently on your A game and at this point I’d struggle to be the orange girl. I have to accept that particular part of my life is over and I’m onto a new chapter. If I do sit and think about it I have come to terms with not working (and I was truly devastated when I gave up work), and when I think logically about the long hours, stress and politics I don’t know if I would want to go back there.

Even no longer working brain fog and I are in a very unhealthy relationship. Hence I find milk in the cupboard and empty saucepans on the lit gas hob. I forget to wash school clothes or fill in excursion forms. I go to the shops and forget my list. Forget I even had a list and come home with yet another packet of toilet paper to add to the 46 I’ve already brought, but minus the bread for sandwiches that I initially went out for.

I frequently can’t find the words I want to use, so talk a lot about ‘thingies’. Conversely I will say the wrong word and not even realise. On bad days I slur like I’ve just knocked back a bottle of tequila, including the worm. If only. Even reading is often hard as I find it hard to maintain my concentration. I look back at things I wrote before becoming ill and I am amazed that I was so eloquent. I look back at my doctoral thesis and I can’t even follow half of what I wrote, yet I know it makes sense, just not to my befuddled brain. It’s like wading through quicksand and I’m sinking fast. It’s exhausting.

Logically I know why it’s happening. I know that I have the pesky problem of having trouble getting the blood to flow above my shoulders. I know that the physical fatigue I feel impairs my cognitive abilities to no end. But this doesn’t make it better. For me I could put up with the physical symptoms if I still had a brain that allowed me to escape reality. Imagination is limitless and you can live a thousand lives in a thousand universes if you have your brain.

Mind you I do have the insider knowledge for when it comes to managing cognitive deficits. Slowly I am applying these techniques to my life. It’s strange that I never felt any less of my patients for having to use them, yet I have a little voice in the back of my head telling me that using them myself is admitting defeat. I’m working on that one. It’s a combination of my new mantra, ‘physician heal thyself’, and a big mental slap that says stop being so stupid woman and use your dosette box. So far the combination seems to be working.

My lack of brain does explain my love of America’s Next Top Model and Judge Judy (oh I can’t believe I just admitted that. I must learn to think before I write). That big echoing cavern between my ears has a lot to answer for.

I miss my brain.

Maybe I’ll drop him a letter. Maybe we can kiss and make up and he’ll come back home. Alternatively, I’m happy to move to Majorca and share a jug of margaritas together. I’ll even bring the sunscreen. Call me brain. Call Me.

Michelle 🙂

Gwen Posting

When I was first diagnosed with Dysautonomia my world came crashing down around me. At the time, I was in marching band and loving it! I was planning to start ballet class when band season was finished (I had been a dancer since the age of 3) because both band and dance were too much. Marching season only had a few weeks left in it when I first passed out and was diagnosed and somehow, someway I pushed my way through and finished my sophomore season of marching band in high school. My plan however of starting ballet back up didn’t happen.

My not being able to start ballet up again caused me to have this really crazy and new outlook on life because I was now sick. I began looking at my life as being, “new.” I also began listing in my head everything that I couldn’t do anymore because of POTS.

Can’t Do List
can’t dance
can’t drive a vehicle
can’t do marching band
can’t physically attend school
can’t play sports
can’t go shopping
can’t go to parties
can’t date

The list went on and on…

A lot of the “I cant’s” I hadn’t even done before I got sick! For me it was simply just the fact that I was 16 years old and I was sick, sick with something that was rare no less. My life was new and it stank!

What’s wrong with the picture here? Is your life REALLY “new” when you are diagnosed with an illness?

I believe that yes there will be things that you won’t be able to do because of your illness. But, does that mean that you will always never be able to do that something? No, it does not. For instance, when I was first diagnosed with POTS, there was no way I could dance. However, five years since my diagnosis I can choreograph some small pieces.

The day you are diagnosed, do you say to yourself, “Well I am now sick, so I am going to forget all of my hobbies, favorite things to do, and everything that makes me, me.”

No, that would be completely silly! Of course you will find new hobbies and new favorite things to do. However, you do that throughout your entire life, not just when you are diagnosed with an chronic illness. You will find things about yourself that you never knew before. For example, I never knew just how strong and brave I can be. I never knew what it would take of me to not take things for granted in life.

What I am trying to say is, is that having POTS doesn’t mean you are a completely new person. You will discover things about yourself that you don’t like and you will change them. There will also be some new hobbies and favorite things to do to keep yourself busy since your days might be a little more free then they used to be. Having POTS, or any form of Dysautonomia or chronic illness doesn’t change you completely and that is what is important for you to remember at the end of the day!

Remember: You may have Dysautonomia, but the Dysautonomia doesn’t have you!

Kyli Posting.

Here is something I said to Liz the other day on the phone.
(& she said, “Quick! Write that down! You put into words what I’ve been trying to say for forever!”)

“We’re put in a situation where we can’t win either way.

If we express how sick we feel, people don’t want to be around us and they think that we’re negative.

But if we try to push through it and pretend that we’re well… then when we do finally reach a point where we can’t keep going & putting on an act (when our health worsens), people have even less of an understanding of what we’re going through. They expect more from us.. and then ultimately, we end up crashing because we tried to do the impossible.”

IS THAT FRUSTRATING OR WHAT?!

It’s like no matter what we do, we can’t please anybody!

And what about when you’re really trying to get to know somebody?
Trying to let them get to know you?
(This is particularly frustrating when it comes to dating, but it’s tough even when it comes to friendships.)

How do you possibly do that? I’m always so torn about it.

On one hand, I am me. Kyli.

I love to laugh. I’m creative. I’m a dreamer. I have a big heart. I like photography and thrift store shopping. Making youtube videos. Singing in the shower. Being spontaneous. Staying up late. Long conversations. Picnics. Movies.

On the other hand, I have POTS.

I’m not always in the mood to laugh. Sometimes I’m too tired to be creative. I’m not always well enough to shop. Sometimes I get lightheaded in the shower and need to sit down.

Most of the time I cannot be spontaneous. Or stay up late. Without paying the consequences physically.

Sometimes I’m even too tired for long conversations. If we go on a picnic, the sun might be too hot for me. I might get woozy. I might need to go inside to cool down. As for movies, sometimes they’re too loud and trigger my tachycardia. The bright lights don’t help either.

The problem I keep encountering with POTS is that when new people meet me, they mistake my symptoms and limitations for being my own preferences and decisions!

When somebody doesn’t understand the effect POTS has on me and my life, it’s impossible for them to really get to know me.

Kyli-POTS=Kyli

It’s impossible for them to get to know the real me, because I’m often overshadowed by things I cannot control – POTS symptoms that make my decisions for me.

It really is like being a prisoner in your own body sometimes. I may as well have an abusive husband or an overbearing parent – somebody who is controlling what I do, where I go, and who I am. It’s no different from that really, except it’s even worse-

I can’t escape!

I’m stuck in a body that is dizzy and weak. That has a low tolerance for so many things – standing, physical exertion, sounds, lights, heat, cold, etc.

And because of that… for five years now I’ve felt like there are very few people who actually know the real me. The real me is so buried, so lost sometimes. Under the symptoms. And so few people are willing to take the time to learn about both me and the condition that ISN’T me. So that they can see who I really am…

That’s why, so many times, I’ve tried to pretend POTS doesn’t exist in my life. I’ve become an actress. I’ve gone shopping with friends, pale-faced and exhausted, on the verge of passing out, pretending I was okay.

I’ve gone to family parties with a smile on my face, even though inside I was sick and feeling so alone because God forbid I mention how I’m feeling.

I once drove in a Convertible on a date even though the wind made me dizzier and the sun made me woozier … just because I didn’t want to say the truth. Because I wanted to seem normal.

But eventually…no matter how good our acting skills are, we eventually can’t compete with our symptoms. Eventually, whoever it is we’re acting in front of, sees our true state. Eventually we get to a point where we can’t keep going – maybe we become so weak, we finally need to admit we need to rest. Maybe we even faint in front of them.

Something happens and the secret is out. All of that acting for nothing.

And then what?

A lot of the time, people are scared off anyway.

Or, because you were SUCH a good actor before, they think you’re actng now. The “healthy act” is real. You being sick – that’s fake. An act. Surely you’re not sick – you went shopping, you played golf, you were laughing at the party. You’re not sick. You’re exxagerating.

When that happens I become so angry with myself for putting on the “healthy-act”. “Why did I do that!?” I ask myself.

And then I realize that I did it because I, like everyone else in the world, want friends and people who care about me. I wanted somebody to talk to, have fun with, date, laugh with.

Yes, I could’ve told them upfront. Sat around and educated them on POTS.

But remember-

The sad truth is that often scares people away.

And God forbid we seem like complainers. Or negative people. Or hypochondriacs.

Or even worse – like a person who’s lost their identity due to an illness.

The truth is …

I’m sure there are wonderful, healthy people in this world who will take the time to get to know a person and their illness. They’re out there. They really are. Few & far between, but they do exist.

And I’ve honestly gotten to a point now where I really do believe I’m worth getting to know. POTS or not.

We’ve grown so much because of what we’ve been through.
Through our suffering, we’ve become stronger people.
Because we’re so fragile, we’re able to look at life in such a unique way.
We love with all of our hearts, because we know something that so many people don’t realize until they’re at the ends of their lives-

Life is fragile and precious! And not to be taken for granted.

& because of all of those things, we are worth getting to know. No matter how many obstacles we face or how many things are “abnormal” about us.

I think anybody who takes the time to know us –

….They’re LUCKY! ….

🙂 Don’t you?

Laura posting.

I’m feeling positive and well rested today, despite having trouble getting off to sleep at first, I think once I did, I must have slept deeply and well.

I was just now thinking about yesterday, and how on some level that crying I did felt healing. It was a release. I think it’s something people with chronic illness all need to do from time to time, whether it comes on seemingly out of nowhere or whether it’s triggered by a hurtful remark, situation or event.

When I first became ill, I suffered for a while with a reactive depression. I was studying at university, all my good friends had moved away, being ill and having little energy meant that I made very few new ones and I felt very lonely and isolated.

I got into ‘self help’ books (as I hate feeling helpless and wanted to do something about the emotional pain I was feeling) and one of the books I read was incredibly helpful.

This book is all wonderful, but there is a particular chapter which struck me back when I first read it, and has stayed with me since. Chapter 9, “Find Beauty in the Land of Tears.”

Susan is a beautiful writer and what she’s saying here is that in order to be human, you have to face suffering- whether that’s your own or seeing someone else’s- because it’s all part of life and what it means to be human.  Susan says that when she learnt to embrace her sadness and not block it out or damp it down, when she learned that it was okay to cry, it led her to a more joyful experience of being human.

“Now, when deep sadness comes over me, I can let it be there like a warm blanket. I don’t have to push it away. It feels so good to just let the tears flow freely. When I let the tears wash over me I feel cleansed and healed. And when the river of tears is empty, I am freer to enjoy the delights the world has to offer, without a layer of sadness dampening my joy.

Paradoxically, my letting in the pain of being human has allowed me to experience the joy of being human. The exquisite moments expand and expand- the moments I am infued with energy and aliveness, the moments I feel connected as part of the human family, the moments I let go of the struggle and feel myself dancing with life. All the pain in the world cannot deny these exquisite moments.”

I’m grateful to Susan for writing this book and teaching me these things. Her books really did help me to change and grow for the better at a time when I felt I was like a flower frozen in the toughest winter, never thinking I’d feel the warm spring sun again.

So if you need to go to the land of tears then go. Be there. Allow yourself to be human. Don’t think it makes you weak, it doesn’t. There’s nothing weak about embracing all of what life has to offer and having your heart open to it all. That includes the sadness.  Keep your heart open and let the sun’s rays light up your life. Keep your heart open, embrace it all, and life’s dark clouds and storms will always pass.

Shan posting;

So i was asked by the lovely Laura to post my Invisible Illness video on this awesome new blog, so here it is!

I also just wanted to try to explain the point i was trying to get across with this video. I made it on one of those days where you are just so sick and tired of feeling sick and tired; nothing could possibly go smoothly on this day.. But for once i decided to put all the (negative) energy and thoughts i was feeling on paper, instead of having one of those ever-so-attractive, “Why me?” pouty, whiney, complainy kind of days (although those can be fun sometimes too).

I didn’t plan the video out at all, i’m not sure i even had a video in mind when doing this, but i just grabbed a post it pad and started writing out all the things i was feeling, and have felt, during the past 6 years of living with Dysautonomia. Lonely, Depressed, Isolated, Ignored, Invisible. i laughed a bit to myself as I wrote down this last one, as it seemed kind of funny to me at the time, that my illness itself was invisible, and here i was feeling that way too.

I stared at all the post-it’s with their negative thoughts and phrases and felt just a little bit pleased by this production. God knows why, as they clearly weren’t at all empowering or motivating words, but it was almost therapeutic, getting them all out there, out of my head. I also felt a strange sense of accomplishment; like i had made it through all these negatives, enough to fill up my whole table, and i was still here, still fighting. On top of all this, it was like i was making all these invisible feelings, physical and mental, visible. It made me feel better about them, seeing them all staring back at me like that.

I decided to make a video out of them, in hopes to be able to let any others with an invisible illness see that they are not alone in their frustrations and hardships, and to also empower them to want to spread awareness about dysautonomia and invisible illness in general.

“Every calamity is to be overcome by endurance.”

Love,

Shannon

Laura here.

I just felt it important to say something here. Yes, I’ve been very upset today. Thanks to everyone who has said supportive things- Kyli, Liz, people through various other mediums such as facebook.

Anyway.

I felt it important to paint a fuller picture. See, when we are hurt and angry, we report things in a one sided way. So I’d really like to say that despite what happened today, my Mum is one of the kindest and most generous people I know. She’s not very good with all this ‘health stuff’. When I try to talk about it, she blanks me out. It’s like she can’t accept it, so maybe that’s part of the problem.

Other than that though, she’s fantastic. She’d do anything for me. One time, she bought me a dress and a jumper when we were out shopping together. I put the carrier bag down in another shop to try on a coat, and I left it behind. By the time she realised and I went back, it had been taken. I was really upset and she not only bought me another dress (and offered to buy me the jumper again too, but I wouldn’t let her) but she drove me to a shop on the other side of town because the dress I’d just lost was the last one.

She drives me places, buys me so many gifts, including little things like my favourite chocolate or a meal that I like. She goes out of her way for me. She’s not a bad person. She just doesn’t really handle this health stuff very well. And sometimes that upsets me very deeply. But she does more good for me than she ever upsets me, so I needed to say that to paint a more balanced picture.

I think loved ones can upset us anyway because we are after all only human and I think they must get frustrated at our illness too and have trouble coping with it, which means sometimes they inadvertently react in ways that hurt us.

I’d still rather be ill and compassionate than healthy and not-so-compassionate like Kyli said. In fact, it’s BECAUSE I am compassionate that I can see beyond my Mum’s hurtful behaviour and still know that she’s a good person. I don’t blame her for it. I get cross and angry and frustrated with her at times for not being more understanding, but I don’t blame her.

She doesn’t understand. She says the wrong things sometimes, but who doesn’t? Everyone fights with their loved ones from time to time even without the complication of a chronic illness. It’s a normal part of life. She doesn’t understand, but she’s generous and kind and would do anything for me. She’s a great Mother. She’s just not PERFECT. Nobody is.