Only Our Minds Disable Us

Of the hundreds of tweets that have floated past my eyes recently, one in particular stood out for me (I'm going to gloss over the one about 'cockwombles').

It went like this:

"Never a fan of hearing 'only our minds disable us' coming from anyone, especially high profile disabled people. It's not a helpful message"    @pseudodeviant

It is a comment about the view of disability that portrays people with disabilities as able to achieve powerful things by determination alone. I was utterly glued to the Paralymics this time last year. I was transfixed by the incredible feats of athleticism from people who only a generation or two ago might have spent their lives in institutions. Let's take the wonderful Sophie Christiansen OBE as an example. Sophie is 25 years old. She has competed as an equestrian in three consecutive Paralympic Games, winning medals at each one, including five gold medals in London last year. Not content with being a phenomenal athlete, Sophie also has a first-class masters degree in maths. 

I don't want to take anything away from Sophie and the other Paralympians, who have obviously dedicated themselves to their sports, and all the commitment and mental and physical strength that entails. Winning a Paralympic medal (or heck, even just qualifying for a Paralympic Games) is an awesome achievement. 

However, in my experience, there is a tendency for people to make comparisons. Often, the comparison is not very specific. I am perhaps one of the least athletic people in human history, and yet I couldn't count the number of times I've been asked if I've considered competing in world class sport, simply because I have a visible disability. For the record, no, I haven't considered it. Day-to-day life is more than enough of a challenge for me. 

During the Paralympics, the message of hope was repeated like a mantra: set your mind on it, and you can achieve anything. 

In my own personal experience, that just doesn't ring true. One of the things that I find most difficult about my condition is its unpredictable nature. Almost every day I am determined to do things, and almost every day my body rebels, leaving me flat on my face, flat on the sofa, or in hospital yet again. I push myself to socialise, bake, knit and read, and most recently, to go out every day. Sometimes it works, and I appreciate the wisdom of those motivating chants. Other times my body insists on full payback. It is during those times that I struggle most with feelings of inadequacy and guilt. 

I try to be forgiving of my body's weakness, working patiently to increase my strength and stamina, despite the symptoms that I experience of a daily basis. Improving my attitude is a big part of increasing my quality of life, but it has to include acknowledgement of my disabilities. My achievements are made with the body that I have. I have to know my weaknesses and work with them. 

I have encountered plenty of people with negative attitudes towards their disabilities. Those who drop everything and wait to get better before they can get on with their lives; those who refuse to do anything for themselves; those who allow their condition to take over every aspect of their lives, or who become bitter and angry. These people, although their disability is in their body, also shackle themselves with their minds. 

Disability is not all in the mind. A good attitude is unlikely to produce miracles, but a bad one will always drag you down.  As one of my friends used to say, "Love life. Dream big. Be positive!"

Being Prepared for Surgery

Before we go any further, you should know that this blog post does not contain any medical advice. There are no exercises, no medications (or alternative remedies), no recommendations for tests or monitoring, and no diet guidelines.

So, if this isn't a medical guide, what is it?

This is a list of things that I do in the days or weeks before planned surgery to make my life easier in the days and weeks after the surgery. Of course, the nature of the surgery will change some things, but I'll try to be as general as possible.

Here in the UK, most people will know their surgery date at least a month in advance (for routine, non-urgent procedures). I like to use that time to think about the effects the surgery may have on my life while I'm recovering, and try to come up with as many solutions as possible before the problems have a chance to rear their ugly heads!

In my opinion, there is almost nothing worse than feeling weak and feeble, in pain, limited by wounds/dressings/plaster casts. Add to that the feeling of unwashed hair and skin, unwanted body hair, and flaking nails, and it's almost a recipe for disaster! Here are a few of the things that I do to prepare my body for surgery and to keep myself looking as normal as possible afterwards.

Hair:

Book a haircut as close to the date of your surgery as humanly possible - this will ensure that your hair looks as good as possible, even if you're not able to give it much attention. If you have very long, thick or curly hair, consider a change of style to one that needs minimal maintenance. This doesn't always mean short! My hair is wavy/curly and prone to frizz. Short styles, for me, mean endless conditioning and styling products and hours of blowdrying or using straightening irons or tongs. With a blunt cut just above shoulder length, I can get away with scrunching a little mousse through my hair and leaving it to dry naturally.

If your hair is coloured, make sure you get your roots done, preferably just before surgery, so that it will look fresh for as long as possible while you recover and build up enough energy to get to the salon for the next colour!

Styling your hair may be another hurdle, especially if the surgery affects your hands/arms/shoulders, or is likely to leave you feeling very weak. I recommend investing in the following basic kit:
1. Dry shampoo: Having hair that looks bouncy and freshly-washed without getting out of bed is like a miracle! If possible, try a couple of brands and stock up on cans of your favourite in various sizes. You may still need help to apply it, massage it in and brush it out again, but it still takes considerably less effort for both you and your helper than a full shampoo and conditioner, plus it doesn't leave your hair wet, so no risk of getting chilled (or getting wet bedclothes)
2. Alice bands and 'crocodile' clips: These are enough to hold your hair back from your face, even if you have one hand out of action. Some people find the fabric bands easier than solid ones, but I'm a fan of the solid ones. The wider the better, in order to cover as much hair as possible! Having the crocodile clips as well means that you can try out a variety of styles with minimal effort or assistance
3. A wide-toothed comb is great for gentle hair-styling (or just detangling); if you can get one with a long handle, so much the better!

If your surgery means that blowdrying your hair is not an option, there are two things you can do. The first is to resign yourself to having a different style for a few weeks, working with your natural hair texture. As you'll be giving your hair a break from heated styling tools, it's a good opportunity to use intensive deep conditioners. Put a soft towel over your pillow and apply the conditioner. Massage your scalp well, and then comb the conditioner through to the ends of your hair. It can stay there until you next wash your hair. Not particularly glamourous or attractive, but your hair will be in better condition afterwards! The other option is to book a course of regular blow-dry treatments at your hairdressing salon. It's a lovely thing to do to pamper yourself, and may be the only way to get your hair washed and styled properly if you have an arm in a cast, but consider how you're going to get to and from the salon if you're not up to walking and not allowed to drive.

Skin:

After surgery, you may not feel like keeping up with your usual skincare regime. I like to cleanse, tone and moisturise, and have various favourite products to exfoliate and moisturise my skin. This all goes out of the window after any surgery, but especially if I have an arm in plaster. Simple cleansing wipes are my saving grace - they remove everything (even betadine, chlorhexidine and EEG glue - all of which you may encounter during your hospital stay!), and leave my skin feeling lovely. At a pinch, you could use them to wash your body, but I wouldn't recommend doing this more than once! My top five tips for skin have to be:
1. If you wax, book a wax prior to your surgery: If you don't wax, think about whether you're going to keep up with whatever method you normally use, and whether it would bother you if you didn't keep up with it. Waxing lasts for 4-6 weeks for most people, and there's nothing quite like feeling smooth and polished when you're a bit weak.
2. Simple cleansing wipes
3. A pleasantly fragranced deodorant (I find spray easier than any other method of application)
4. A real sponge and a mild liquid soap: it's hard to rinse properly if you're washing in bed or in a chair, but it's not the end of the world if a mild soap stays on your skin - aqueous cream can be used instead of liquid soap - it doesn't feel particularly 'cleansing' but it does work, and it'll leave your skin lovely and soft
5. A luxurious moisturiser: it may be more difficult to apply, but having the luxury of my favourite scent as well as soft skin is worth the time it takes to apply it! There are lots of different types of moisturiser, depending on your needs - it may be easier to use a body butter that's almost solid and won't run everywhere, a pump dispenser, or a spray.

Cosmetic:

More than any other part of me, my face gives me away after surgery. It takes almost nothing to make me look pale and drawn, with dark circles around my eyes, and it is guaranteed to make me feel worse if I see myself in the mirror looking like that. Of course, there's always the option to just avoid the mirror, but let's assume that we generally like mirrors.

Before surgery:
1. Shape your eyebrows and wax/thread/pluck any stray hairs
2. Get your eyelashes tinted: this is cheap and readily available at salons, and will mean that you don't need to wear mascara for up to six weeks. I have no arguments for the pedants who say that you don't need to wear mascara anyway. I like to have dark lashes, and drawing attention to my lashes and big green/blue eyes is better than drawing attention to the dark circles around my eyes!
3. Invest in a cream blush, or even better, a cream product for cheeks and lips: I love the Benefit Benetint lip and cheek balm and Bobbi Brown's Pot Rouge in Powder Pink. Give me 30 seconds with either of these, and I'll magically transform into a healthy-looking creature before your very eyes.
4. Get a really good brightening concealer for under-eye bags and any other dark shadows that may emerge post-surgery: My intention is not really to promote lots of beauty products, but I use Clinique's Airbrush Concealer. I've used it for many years, and love it. It is also very easy to apply. Even with one hand. Even if that hand is your non-dominant hand.
5. Stock up on moisturiser and lip balm: Hospitals are dry places, and my skin is dry and flaky for days or even weeks afterwards, so I use a much heavier moisturiser than usual.
6. Choose some low-profile jewellery to wear while you're recovering: You'll probably have to remove all your jewellery for the surgery (you may be allowed to tape over a wedding band) but you'll need something simple to wear afterwards, if only to maintain piercings (don't forget about belly buttons, tongues, lips, etc. and make sure you have someone ready to put them back in for you after surgery if you can't do it yourself). I usually wear plain pearl or diamond stud earrings, a simple, light necklace, and my wedding and engagement rings, but no other jewellery. It's enough to keep me looking polished, and to keep the holes in my earlobes open, and that's all I need.

After surgery:
Get a manicure and pedicure: Don't make the mistake of doing this prior to surgery, as you'll just have to take it off, which is a bit of a nightmare if you have a gel or shellac manicure. Once you're safely out of the hospital, book yourself in for a mani-pedi, preferably with gel or shellac polish, which lasts for a couple of weeks without chipping or flaking. I like to get a bright colour on my feet and a neutral colour on my hands - it does have to go with everything for two weeks, after all! If you're not well enough to go out for your manicure, you may be able to find a mobile technician who will come to your home, or even to the hospital.

After all this preparation, I'm sure you're just about ready to just get to the hospital so that you can have a break, but three last things:
1. Order some pretty seasonal flowers to be delivered a couple of days after you get home from hospital (unless you're likely to be inundated with floral gifts from friends), or buy yourself an orchid in bud, so that it'll flower when you get home and are there to see it.
2. Put fresh sheets on your bed ready for when you get back. If you're anything like me, this thought will sustain you through the hard first night in the hospital after surgery. I tell myself that I just have to get through this night (and maybe a couple of others) and then I can go home and snuggle into my lovely soft bed with the clean, fresh sheets, and that means that Everything Will Be Alright.

Life-Limiting Illness

One of the things that has really hit home over the last few months, as I've spent so much time in hospital, is that my illness is progressing. I have known for a long time that I probably wouldn't live to be 100 to receive a telegram from the Queen (or perhaps King, by then!), but with each new problem, it seems increasingly likely that I may be lucky to make it to 50.

I've lived with severe 'brittle' asthma for almost all my life. I also have severe allergies. Either of those could kill me. While thatt makes it a bit scary when I have an asthma attack or anaphylactic reaction, most of the time I can forget about those and put the thoughts of death to the back of my mind.

More recently, as my GI tract has shut down, my autonomic dysfunction has become more pronounced and my blood sugars have become more difficult to control, I have needed more day-to-day medical support.just to remain stable. I have a jejunostomy tube for medications and low-volume feeding, and a Hickman line (permanent IV line) for medications and IV fluids. My team are gearing up to start me on parenteral (IV) nutrition, which carries with it many risks. Risks of bloodstream infection (septicaemia), liver damage and blood clots, to name just a few. I know that these risks are small in comparison to the guaranteed complications of starvation and malnutrition, but they are still significant.

I can accept the restrictions that my illness has placed on my life. I am still so grateful to be alive, and to have the opportunity to experience this wonderful world. But I don't feel ready to die. Not now, and not in five or ten years. Probably not even in 20 years. There are still so many things that I want to experience. I want to grow old with my husband. I want to see our friends' children grow up, and to have nieces, nephews and godchildren, and to be there for them. I don't want to miss the conversations, the celebrations; even the bad times. I want to be there to comfort my husband, friends and family; to grieve with them in the sad times and rejoice with them in the good.

I am not afraid of death. I just don't feel ready to stop living.

My husband and I are very open with each other about this. We both know that I have a life-limiting illness, and we live accordingly. We seize our opportunities when they arise - who knows what might be impossible for me by next year or the year after? We talk about funeral plans and end-of-life decisions for both of us. We discuss the things that are important to us about medical care, our thoughts on remarriage, what we want to happen to our bodies after death, and how we want to be remembered.

During one of these conversations, I asked my husband how he copes with the thought that I will die before I'm old. His response?

"I will love you for as long as I have you. And then a bit longer."

Visible Reminders of Illness

Every so often the question arises about whether it's 'better' to have a visible illness or an invisible one.

Outward signs of illness can be really helpful to remind others of our limitations - my joints may be screaming in pain, I may be nauseous, dizzy and on the verge of fainting, but these things are all easily overlooked if people aren't suspicious and/or don't know me. Because I tend to smile a lot, even the doctors treating me can get quite a shock when my test results start to come back showing me as much sicker than they expected.

I don't like to tell people when I'm not feeling well. In fact, some of the time I don't even admit to myself that I'm not feeling well. Sometimes this backfires on me, meaning that I try to adjust and adjust and adjust my perception of 'my normal' until it's completely unavoidable.

Over the last couple of months I have spent more time in hospital than out of it. All of a sudden I have quite a lot of very visible signs that all is not right with my body. I have a permanent IV line sticking out of my chest, which is used to provide constant fluids, and through which I will shortly be receiving most of my nutrition. I'm waiting for a feeding tube into my small intestine, which will be used for small amounts of nutrition and some medications. My doctors have started to talk about the need to replace my manual wheelchair (which I only use part-time) with an electric wheelchair.

It would be very easy to think of this as reflecting a serious decline in my physical health. What I'm trying to do instead is be grateful that my body is now receiving the support it needs in order to function. I have been mostly housebound and constantly symptomatic for longer than I like to admit. I hope that these new interventions will improve my quality of life and allow me to get (and stay!) out of hospital.

Of course I'm still a bit scared of looking after the new tubes and handling new medications and processes. It will take time to adjust to the way my body now looks, and to having a constant companion in the form of a feeding pump to carry around with me. I still need to learn how to explain the changes to the people around me, and of course I'm still grieving for the loss of my ability to eat normally, and all the social changes that brings with it.

But essentially I'm still me! I might even be a more energetic and rosy-cheeked version of me once I get some decent nutrition. I'll certainly still be wearing lipstick, nail varnish and beautiful shoes. Most of all, though, I will be grateful for the continued opportunity to live this wonderful and precious life.

Is it ok to be scared?

Of course it's ok to be scared.

Life is a great adventure, but it's understandable to feel apprehensive about pain, other symptoms, disease progression and even death.

The problems really arise when the fear and apprehension become so all-encompassing that they eclipse all other feelings. Every day can hold so many fearful opportunities, and life loses some of its sparkle when we lose sight of the reasons it is worth living.

 I know that I will probably die younger than most of my friends. I don't want to miss out on anything, but by focusing on my grief at having a shortened life expectancy, rather than on the opportunities in each day, that's exactly what I'm doing.

One of the ways that allows me to enjoy each day is to control my symptoms. By taking control of monitoring my conditions (even when this involves tedious blood testing or time-consuming calculations of fluid balance) and taking the right doses of the right medications at the right time, I am giving my body the best possible chance to perform when I want to do fun stuff.

Part of this relates to acceptance - acceptance is not just recognising the name and impact of your condition. On the other hand, it is also not about making illness (or recovery) the whole focus of your life. There has to be a balance between living with the condition and living despite the condition.

Fear is one of those things that can seriously get in the way of living a productive life despite illness.

For me, the first step is to recognise the things that make me anxious - there are almost always ways to get around these things, whether it's ringing ahead to a restaurant to discuss appropriate food choices to avoid anxiety on facing the menu, working with therapists to increase strength and range of movement, or discussing better pain management strategies with your Dream Team.

I'm scared of having long-term lines (IV and a feeding tube) - the responsibility of possible infection, the cosmetic implications (not that I've ever been a bikini girl!), the pain associated with insertion, and all the kit that I'll have to learn to use at home. I'm also scared that I can't deny the effects that this illness is having on my body - no more pretending that I'm perfectly healthy!

Thankfully, I don't have much of a choice in the matter of the tubes, so I'm just going to have to bite the bullet, put on my Big Girl Panties and deal with it. Focusing on the positives is going to be my strategy of choice - I'll be able to spend less time in hospital for a start! Obviously (because I love lists) I also have a list of fun things that I'd like to do once I have some calories inside me, and therefore some energy!

Am I still scared?

Yes, of course I am. Having a list of fun things to do and lots of lovely people to share these activities doesn't take away the reality of daily symptoms and possible future declines. What it does do, however, is remind me that however dark it may seem under my own personal grey cloud, if I make enough of an effort, there's always a silver lining to be found.

Courage

A favourite quote of mine states that, "Courage doesn't always roar; sometimes courage is the small voice at the end of the day saying 'I will try again tomorrow'." (Mary Ann Radmacher).

This touches me deeply because it is so understated. Courage is often perceived as an active process, by which people act heroically in unimaginable circumstances, rushing through flames, or leaping from great heights without a second thought for personal safety.

My own personal variety of courage is always mingled with fear, and often with a sense that I would rather like to avoid any unpleasantness if at all possible.

Of course, living with the sort of illness that I have doesn't leave much room for the avoidance of pain or unpleasantness. Privacy, dignity and painlessness have all long been left by the wayside, along with vanity and the ability to plan for my future. I am learning, slowly and with the minimum of grace and courage, to breathe through the pain, to accept 'right' over 'pleasant' when necessary, and to appreciate the many, many things that make life wonderful despite the setbacks.

Courage stems from a belief that life is better than the alternative. Would I prefer not to spend time in hospital with the naked ladies who want to share my bed? Would I rather not have to be fed through a tube or have a large IV line in my neck for medications and fluids? Would I like to sleep through the times when my (many) medications are due, or rush out of the house for an adventure without packing any of the important medical kit?

Of course I'd like things to be easy, but focusing on the things I'd like to avoid means overlooking the many wonderful things that I still get to experience. The reason that I end each day quietly determined to try again tomorrow is because it's worth it.

Being kind to myself

I have been feeling sad since I got home from hospital at the end of last week.

Instead of feeling grateful for the delicious soups, smoothies and ice lollies I can eat, I have grieved for the things that I can't eat. I stood in front of the sandwich counter at my local shop yesterday and sobbed about not being able to eat the cheese and pickle that I craved.

Instead of feeling grateful for my big, comfortable bed and fluffy pillows (and the wonderful husband and cat that share the bed with me) I resent my 'snuggly prison' and dwell on the places I would rather be. I think of the exhibitions I'm not visiting, the full-time job I'm not doing, the friends I'm not seeing.

My hair is falling out in clumps and the little that I have left is dry and frizzy. My nails are cracked and brittle, flaking and ridged. None of my clothes fit because I have lost so much weight in the last couple of months. Even the beautiful lingerie that I wear to feel secretly sexy under my comfortable, disability-friendly clothes no longer fits properly. I feel sad to be losing the curves that have defined my body shape for so many years. 

Deep down, I know that this isn't a helpful attitude, but how to change things for the better?

First of all, I have decided to take some time to look after myself. I don't know why I am so much harder on myself than I would be if it were one of my friends in this situation, but I am. That has to change - charity begins at home, right?

Where do I start?

1. Take a long, hot bath
2. Paint my nails
3. Smother myself in my favourite body lotion
4. Put on my prettiest pyjamas
5. Play some feelgood music

That done, I'm ready to adjust my attitude.

I feel sad because I can't eat the things that I want to eat. I can't change that, but I can decide to appreciate the liquid diet that I have. So many people with the same condition as me are not able to eat at all.

I feel sad because I am stuck at home and isolated. So, I need to invite some friends round! A friend who lives nearby dropped in today just on the offchance that I was home and free. It made my day. It wasn't an issue that I couldn't eat, or that I couldn't do much more than sit. We chatted and laughed, talked about books and politics and husbands, listened to music and planted seeds. My friend went home after a couple of hours, leaving me feeling more uplifted than I have felt in weeks.

It's very easy to become isolated when even getting dressed is a chore, but I'm beginning to realise that my soul craves company.

So, my first new resolution is to make sure than I see someone other than my husband at least once a week. I'm not going to beat myself up if I don't look perfect with freshly-washed hair and a well put-together outfit, or if we don't do anything more than watch a film together or even just sit in the garden with the cat and the newspapers.

My second resolution is to wear lipstick At All Times. I love lipstick. It makes me feel confident. I talk a lot about my Brave Face. This is the face that I present to the world, that can deal with the medical world and all its pessimism. Of course it slips occasionally, and I'm not saying that it's not ok to cry sometimes, but lipstick helps the Brave Face to stay in place when I need it.

Thirdly, and finally, I am going to ask for help when I need it. I love having the opportunity to help others, so why do I find it so hard to admit that I can't get through this alone? 

1. Spend time with friends
2. Wear lipstick
3. Ask for help

Simples!

Celebrating Getting Older

It's a week until my birthday, and I've been thinking a lot about getting older.

I can't say that I'm looking forward to the day itself. I'm currently stuck in a bit of a gastroparesis flare, so there will be no cake, no Champagne, and certainly no 7-course dinner at Le Gavroche for me! None of my clothes fit me, I have even less energy than usual, and forcing myself to take in at least some nutrients is causing pain, nausea and vomiting.

Despite that, I like birthdays, even this one. Every year I feel pride at surviving another year. Yes, every year I survive things that I might not have survived. More than that, I celebrate having survived the pain, nausea, boredom, frustration, breathlessness. I have survived everything that my failing body has thrown at me and everything the medical world has thrown at my failing body.

I'm so grateful to have the opportunity to have lived long enough to get into my 30s; so grateful to have had the opportunity to marry my very best friend, who loves me more than I've ever been loved before; to have travelled the world, met amazing people, and spent time with those who mean the most to me.

I look forward to celebrating this next birthday, regardless of whether I'm healthy enough to celebrate in the way that I would like. It's enough for me to be here - everything else is a bonus!

Grief

Denial
Anger
Bargaining
Depression
Acceptance

Elizabeth Kubler-Ross' five stages of grieving, from her book 'On Death and Dying'. Originally, these five stages were applied to those with terminal illness, or those grieving the loss of a loved one. I think that they can also be applied to those of us with chronic illnesses, whether life-limiting or not.

I am 30 years old, soon to be 31. I have been ill for longer than I can remember. Over the years, I have suffered losses as a result of my illness: my hearing; my ability to run, and then to walk; the career that I always thought was my destiny; friends; independence. I could go on, but I'm sure you get the idea.

These little losses can build up until life seems utterly hopeless. Grieving for these losses can cause losses too. I mourned my joie de vivre as much as the loss of my long-awaited career. Thankfully, my love for life returned, and I found other interests to occupy my time. This, I suppose, is acceptance.

If I were to reshape the stages of grief, I would make them into the shape of a spider web. Not only because there's a large spider on the other side of the room, but because I have so often bounced from one to the other in no apparent order. Having reached the glorious state of acceptance, I sometimes find myself ricocheting into anger, denial, depression, bargaining and back, all within the space of a few days. Sometimes even within the space of a few hours.

Acceptance for me has been about valuing the things that I can still do. When that has seemed next to nothing, I have tried to take up new hobbies. I re-learnt to knit when I was housebound for six months, and this has proved immensely satisfying. Not only does it occupy many lonely hours, but I have something beautiful to show at the end of it. Something that I have made, without walking, without lifting, despite pain. I am reaching a point where I can't knit for long without dislocating my fingers and wrists, but feel peaceful about this. I have been here before, and I will still be me, despite everything that my body throws at me.

Acceptance has also been about defining myself according to who I am, rather than what I do. I am no longer a medic, a scientist or an investment banker; no longer a GB waterskier, a swimmer or a wheelchair-skills tutor. On good days I can still be sociable, bake, read and knit. On bad days I sleep, vomit, nebulise and take medications. Despite all of this, I am still me. I am kind, enthusiastic, deeply interested in the world around me, hopeful, optimistic, grateful, generous, and sarcastic.This 'me' may live in a decrepit and failing body, but it is little different for that. I look after this body as best I can and hope that it will continue to support me for many years to come.

Despite the state of my body, I am glad to be alive.

I still remember

My current hearing aid

The titanium attachment point for my hearing aid

I still remember, at the age of four, fighting with my parents because I didn't want to take my hearing aid out at bedtime.

I didn't want to miss anything while I was sleeping.

This encounter sets the tone for my lifelong relationship with medical intervention - I love anything that allows me to interact more fully with the world around me.

Yes, it can be hard to be different, especially as a teenager/young adult, but I was so grateful for the hearing aid (now converted to a bone-anchored device fixed into the side of my skull) that allowed me to follow conversations, even in groups. So grateful for the wheelchair that allowed me to get out of the house and go on the holiday where I met my husband. So grateful for the breathing treatments and steroids that keep me out of hospital (most of the time), and for the painkillers that take the edge off the pain enough that I can smile and mean it.

Of course, it would be easier if I could function normally without all the medications and medical aids, but given that isn't really an option, I'll continue to be grateful for the things that allow me to participate in the life that I love so much.

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

My Own Normal

I caught myself, only this morning, telling myself that 'I don't want to be invincible - just normal.'

Normal, in this instance, means that I want to be able to stand up without my heart rate passing 180 beats per minute, that I'd like to have a hot shower (standing up) without ending up in a grey and dizzy heap on the floor, and that I'd like to bake a cake and then be able to eat it. Not all of it (though that might be fun), but just a normal slice, with a cup of coffee.

Is that too much to ask?

Apparently, today it is far, far too much to ask. My normal today has involved taking my medications while horizontal (this requires a drinking straw and much patience, among other things) and then remaining horizontal until they kicked in. I tackled the stairs bottom-first, being careful not to hit the cat when I threw my crutches down the stairs ahead of me. And I am now horizontal on the sofa with a mug of peppermint tea, where I plan to stay for the rest of the day, apart from a brief upright moment once I have the strength, so that I can switch on the television or fetch my favourite recipe book so that I can dream about cake.

Some days I feel closer to the dream of normality than others, but in reality, my body is never going to cooperate with a Hollywood view of normal. I am never going to run through central London in beautiful stilettos, perfectly blow-dried hair bouncing as I run. I do not swing my Mulberry handbag nonchalantly while kicking leaves in Hyde Park, or juggle shopping bags to make space to carry a tray of perfect cupcakes from the Hummingbird bakery before going home to create a beautiful meal for my perfect family.

The first step is to accept that there is no such thing as normal, and that the above paragraph is the stuff of dreams. The second, to accept that I have to work with what I've got. My normal.

Accepting my own normal gives me the opportunity to make the best of what I have. I can't run in stilettos (or at all, for that matter), so rather than spend my days dreaming and shopping online for yet more impractical shoes, feeling sad that I will never get to go out and kick leaves while wearing them, I am planning an outing in the car to see the changing leaves. We'll take advantage of the next sunny day, put the roof down on the car, and ooh and aah at the different colours as we drive through groves of trees. This is a dream that has a future.

Even realistic dreams take planning. To make these dreams reality, I will have to rest more either side of the fun stuff. I may need to increase my medications, or juggle the schedule according to which I take my medications. We will fill the car with supportive pillows and blankets. It might be that we don't manage to see the changing leaves this year, but go out to see the first snowfall, snowdrops, bluebells, or groves of daffodils in the spring.

But there is no sadness in planning like this. The sadness comes from wishing for things that cannot be; longing for a life that isn't mine. Accepting my life and my normal gives me the opportunity to look forward to a future of real, attainable achievements.

Like managing to get up, turn on the television and find myself a book about cake.

Success!



This blog was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Gratitude

 After the week I've just had, I have to say that writing a post on gratitude was not the first thing that came to mind.

Gratitude is a big topic.

People with disabilities and chronic illnesses are often accused of being ungrateful, or of complaining more than they should. It is common to hear the criticism that, "They just don't know how good they have it," of those who are healthy and able-bodied, or even those with illnesses or disabilities that are deemed to be 'less severe'.

As my body has become more affected by my illness, I've found myself thinking that same thing, and criticising my younger self for not realising how good things were. It's not the big things that I could have done that I regret (though maybe I would have done more travelling), but the feeling that I didn't appreciate the little things enough until they were no longer possible.

Though it's too late for many experiences, I try to relish everything now, however tiny. I appreciate colours, scents and flavours; the turns of phrase and mannerisms of those I love. That doesn't mean that I don't grieve for those things (and people) that I've lost, or for the things that might have been. It doesn't mean that I don't experience daily symptoms to drag my days down into reality.  What it does mean is that I choose to focus on the things that I enjoy, and that are special to me, rather than focusing on the things about my life that make me sad.

Gratitude doesn't mean that everything is perfect.

As I sit here now, typing this, I'm taking one of my 19 daily medications (this one takes 10 minutes - perfect for starting a blog post). I can't walk more than a few metres without getting short of breath, or sit without pain in the joints that dislocate even at rest. Currently, and I really hope this is just a flare-up, I am not able to eat at all, or even drink much.

But I am still grateful.

I am grateful for my cat, curled up in a purring, dribbling heap of companionship beside me; grateful for the tiny pink cyclamen by the garden door that even I (with my black anti-gardening fingers) haven't managed to kill, and which is flowering cheerfully against the autumn weather. I am grateful for the candles on the dining table, which I will light when the daylight goes. I am grateful for the daylight, grey and meagre as it is, and grateful for the people outside on the street who have braved the grey weather to provide entertainment for me as I people-watch from my window.

Loneliness is a feature of most of my days, so I am especially grateful to those who reach out and break into my isolation, whether online or in real life - my husband, family and friends.

I am grateful for the medical professionals who work so diligently to give me some quality of life.

But quality of life can't really be given, can it?

My symptoms can be controlled to some extent, but unless I choose to accept my situation as it is, I will never really have quality of life. I could quite easily justify spending the rest of my life lamenting my circumstances, feeling jealousy towards those who can do things that I can't do, and directing inwards the anger and frustration that I feel about my illness.

Gratitude is the alternative to all that. It is making the decision to seek quality in the life that I have, not the life that I might prefer. It is choosing to embrace each day and the things that it may bring, taking pleasure in the little things. Perhaps most of all, for me, it is choosing to take care of my body despite its many flaws, and love it for what it is; loving myself for who I am, so that I can appreciate all that I have, and be grateful for it.

Gratitude is a choice, not a feeling.

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
It is also part of the chronicbabe.com fortnightly blog carnival

A Bad Case of the Monday Blues

Mondays often find me in contemplative mood, and there are certain questions that come up in my mind again and again, week after week.

Will I achieve anything this week?

How many plans will I have to cancel because my body lets me down?

Will I end up spending days in bed or even in hospital this week?

There is a certain amount of fear associated with these questions. Fear that the next severe asthma attack or anaphylactic reaction will be my last - not just landing me in ICU, but worse; fear that my friends or husband will eventually get fed up with me being sick all the time; that I'm no use to anyone.

There is also the unnamed fear that I might not be strong enough to handle whatever comes next. My body likes to throw curve balls, and also seems excessively fond of my local hospital, despite the food. I find hospitals scary places, which seems an odd thing to admit, given the amount of time that I spend in them, but every time I get that scared, tight feeling in my chest, and would like nothing better than to stick my head under the duvet until it all goes away.

But, as many of you will know from personal experience, that isn't an option. The pain, nausea, fatigue, dizziness and shortness of breath will follow you under the duvet. They are in this for the long-haul.

So I have tactics. I try to be prepared for the unexpected (I still need to show you my hospital bag and handbag), and try to make friends with the doctors and nurses. I keep good 'emergency lists' so that the ER doctors are able to treat me appropriately while they wait for my medical records, and so they can see the most important points in my medical history without having to spend several days poring through my (extensive) notes. I try to stay well hydrated so that my veins are as prominent as possible, keep my phone, kindle and laptop charged, keep a hospital bag packed, and keep plans with friends as flexible as possible.

Every Monday, despite my fear of what this new and unknown week may have in store for me, I try to remember that it may have wonderful things in store. There are beautiful and amazing things to be found in each new day, and I try to spot them and be grateful for them. I am so grateful to you, dear reader, and to my friends, husband and family for giving me the strength to face this new week, and the hope that the good in this week will outweigh the bad.