When someone asks me how I am, I rarely pause to think before answering, "I'm fine."
Clearly, this is not actually the case.
By any definition, I am not fine, but I know that I am not alone in telling people that I am. Is it because I don't believe that people really want to know the uncomfortable truth? Because I don't have the energy to explain how things really are? Because I don't want people to feel sorry for me, or because I don't want them to think that I can't cope?
Well, perhaps it's all of those things, and a few more besides.
My advice to myself is to remember who is asking. My husband knows perfectly well that I'm not fine, as do many of our close friends and family members. They deserve more than to be brushed off with, "I'm fine," or even, "I'm fine, thank you." These are people who care deeply about me, and who go out of their way to offer help and support in difficult times, and who celebrate with me when times are good. Honesty is the least I can offer them in return.
Knowing intimate details about my medical conditions is a privilege. These details are shared with people who earn the right to know, not with everyone. It is not everyone's right to know whether I plan to have children (or whether I am able to do so), if I have been in hospital recently, or whether I have any more upcoming surgery planned. A gentle, "I would prefer not to talk about that" or, "That's a very personal question" is usually enough when I don't want to share.
Keeping things to myself often means that I also turn down help when it's offered. This is not a clever thing to do. I'm not trying to say that I shouldn't ever do anything for myself (quite the contrary, in fact!), but when pain levels are high and energy stores are low, taking someone up on a kind offer to put away the shopping or to come over with a takeaway meal can be a huge blessing.
You don't have to tell every painful detail to everyone who asks, but try to think of a few ways in which you might let people know how you're really doing. I've come up with some to get you started:
1. I'm alright, but I've had a tough couple of weeks
2. I'm recovering from a busy few days
3. I'm having a bit of a flare-up of my illness at the moment
4. Physically, things aren't great, but I'm keeping my spirits up
5. I've been in hospital recently, and it's taking me a while to build up my strength after that
Remember, honesty is the best policy, and don't be afraid to ask for help and support if you need it.
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
Sunday, 13 November 2011
Saturday, 12 November 2011
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
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
Friday, 11 November 2011
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
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
Thursday, 10 November 2011
Advice for Hospital Visitors
As I am still in hospital, I feel well-placed to advise on things that would brighten my days while inpatient. People often tell me that they're not sure whether they should bring anything, and if so, what they should bring. I would like to make it crystal clear that your company is the best thing you could possibly give me, and I will be hugely grateful for the break in the monotony of the hospital day. But if you do feel like bringing something (or sending something if you're not able to visit), I've made a list of suggestions.
General tips (specific to me, but may also apply to others):
Most hospitals don't allow plants or cut flowers
Strong scents can set off breathing problems, either for me or for those around me
Space is limited, but hospitals tend to be ugly and boring and in need of decoration
I have gastroparesis and food allergies/intolerances, so there are lots of things that I can't eat at the best of times, which is exacerbated when I'm unwell.
Many hospitals don't have fridges or microwaves for patient use
My energy levels are pretty puny even when I'm well - please don't be offended if I doze on you. I promise I'm still grateful for your company!
So - wonderful things to bring:
1. A newspaper - I often feel cut off from the outside world while inpatient. The smaller, tabloid-sized papers are easier to handle. I don't mind if it's the free London paper (Metro or Evening Standard), or if it's yesterday's, or if you've already read it. In fact, I might even prefer it if you've read it so that you can point me in the direction of the best stories!
2. Email links to interesting news stories or blog posts, or just a chatty email/card.
3. A cup of nice (aka non-hospital) coffee. I drink soy or skinny latte (thanks for asking), or hot chocolate if you think that I might be in need of comfort. I love going out for coffee and rarely manage it, so having coffee brought to me in hospital is a real treat.
4. There are lots of things that I can't eat, and this list often increases when I'm unwell in hospital. However, chocolate always goes down well with the nurses! Most of my roomies have said that they crave fresh food that tastes of something - a fresh muffin from the coffee shop downstairs, a punnet of strawberries, deli snacks (e.g. hummous and breadsticks). A friend of mine brought me a mug and some herbal teabags, which was one of the nicest presents I've ever received. Sadly, I broke the mug, but I still think of Adam every time I drink jasmine tea!
5. Interesting drinks - I get cravings for diet coke and 7-up free, but Richard has brought fruit juices, smoothies and milkshakes, which have been much appreciated (and probably better for me, as they're not empty calories). A hilarious friend of mine once brought a bottle of Champagne and two glasses, which we drank while sitting on my hospital bed, gossiping and admiring the view over London - Big Ben, the London Eye and the Houses of Parliament. Can't imagine I'll ever repeat that experience, which makes it even more special!
6. Trashy fashion/celebrity/gossip magazines. I confess, they're about the level I can handle while in hospital!
7. Gel cling window decorations always brighten my day. Festive decorations (Christmas, Easter, Valentine's, etc.) are also welcome - spending holidays in hospital can be pretty miserable. Photographs of you, or of us together are a nice way to decorate the space. Don't forget the blu-tack!
8. Funny youtube videos to watch; recommendations for programmes on iPlayer/ITVplayer/4-OD.
9. Stories to tell - these don't need to be exciting. If I'm in hospital for asthma, I usually can't talk much without getting out of breath, so hearing about your day at work or your plans for the weekend is lots of fun for me.
10. Clothing - my dad always used to bring me brightly-coloured socks when I was in hospital as a child/teenager (I had quite a collection for a while!), but comfortable t-shirts or pyjamas would be well-received too.
11. Music (or recommendations on iTunes) - I spend a lot of time with headphones on, either watching TV or listening to music/radio.
12. Entertainment: Card or board games, puzzle books (e.g. sudoku, crosswords)
13. Things to make me feel attractive - hair ties, nail varnish, lipstick. A friend of mine came to visit me after I'd had surgery on both arms and was feeling a bit grotty - she tidied my hair and put make-up on for me. I can't tell you how much it improved my mood!
14. Practical things: shower gel, moisturiser, cleansing wipes.
15. Books to read (I really mean recommendations for my Kindle, as I'm not up to holding a real book for long these days) - nothing too hard on the brain. I'm not talking Dostoevsky or other Great Literature.
16. Small craft projects - I spend a lot of time knitting, but anything that occupies a few hours is a blessing.
17. Cups, mugs or straws: I have star-shaped bendy straws, which brighten the chore of drinking soluble medications or Ensure (bleuggh!). Many years ago, Richard gave me a pink plastic cup with fairies on it and a straw that curled up the outside. My fluid intake probably doubled as a result of that cup!
18. Jokes. The weaker the better. My brother is an absolute expert at this - we have been exchanging cheese-related jokes (and science jokes, but I won't bore you with those) for months now. What do you call a cheese that doesn't belong to you? Nacho cheese (not your cheese!)
19. Balloons. These are cheerful and colourful, and generally just wonderful!
20. A soft or colourful pillowcase, stuffed toy, microbead cushion or other tactile/cuddly thing.
BUT:
Really and truly, your company (either real or virtual) lifts my spirits more than you could ever know. That text that took you about a minute to send brightened my mood for hours, and I read it at least ten times; the half hour that you spent chatting to me over a coffee helped me to get through the day, which was otherwise filled with pain, struggling for breath,etc. Hospital can be a very lonely place, and the days and nights can seem unbearably long, especially if symptoms are severe. You can't change any of the crazy tricks that my body is playing on me, but you can certainly help the way that I view my life.
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
General tips (specific to me, but may also apply to others):
Most hospitals don't allow plants or cut flowers
Strong scents can set off breathing problems, either for me or for those around me
Space is limited, but hospitals tend to be ugly and boring and in need of decoration
I have gastroparesis and food allergies/intolerances, so there are lots of things that I can't eat at the best of times, which is exacerbated when I'm unwell.
Many hospitals don't have fridges or microwaves for patient use
My energy levels are pretty puny even when I'm well - please don't be offended if I doze on you. I promise I'm still grateful for your company!
So - wonderful things to bring:
1. A newspaper - I often feel cut off from the outside world while inpatient. The smaller, tabloid-sized papers are easier to handle. I don't mind if it's the free London paper (Metro or Evening Standard), or if it's yesterday's, or if you've already read it. In fact, I might even prefer it if you've read it so that you can point me in the direction of the best stories!
2. Email links to interesting news stories or blog posts, or just a chatty email/card.
3. A cup of nice (aka non-hospital) coffee. I drink soy or skinny latte (thanks for asking), or hot chocolate if you think that I might be in need of comfort. I love going out for coffee and rarely manage it, so having coffee brought to me in hospital is a real treat.
4. There are lots of things that I can't eat, and this list often increases when I'm unwell in hospital. However, chocolate always goes down well with the nurses! Most of my roomies have said that they crave fresh food that tastes of something - a fresh muffin from the coffee shop downstairs, a punnet of strawberries, deli snacks (e.g. hummous and breadsticks). A friend of mine brought me a mug and some herbal teabags, which was one of the nicest presents I've ever received. Sadly, I broke the mug, but I still think of Adam every time I drink jasmine tea!
5. Interesting drinks - I get cravings for diet coke and 7-up free, but Richard has brought fruit juices, smoothies and milkshakes, which have been much appreciated (and probably better for me, as they're not empty calories). A hilarious friend of mine once brought a bottle of Champagne and two glasses, which we drank while sitting on my hospital bed, gossiping and admiring the view over London - Big Ben, the London Eye and the Houses of Parliament. Can't imagine I'll ever repeat that experience, which makes it even more special!
6. Trashy fashion/celebrity/gossip magazines. I confess, they're about the level I can handle while in hospital!
7. Gel cling window decorations always brighten my day. Festive decorations (Christmas, Easter, Valentine's, etc.) are also welcome - spending holidays in hospital can be pretty miserable. Photographs of you, or of us together are a nice way to decorate the space. Don't forget the blu-tack!
8. Funny youtube videos to watch; recommendations for programmes on iPlayer/ITVplayer/4-OD.
9. Stories to tell - these don't need to be exciting. If I'm in hospital for asthma, I usually can't talk much without getting out of breath, so hearing about your day at work or your plans for the weekend is lots of fun for me.
10. Clothing - my dad always used to bring me brightly-coloured socks when I was in hospital as a child/teenager (I had quite a collection for a while!), but comfortable t-shirts or pyjamas would be well-received too.
11. Music (or recommendations on iTunes) - I spend a lot of time with headphones on, either watching TV or listening to music/radio.
12. Entertainment: Card or board games, puzzle books (e.g. sudoku, crosswords)
13. Things to make me feel attractive - hair ties, nail varnish, lipstick. A friend of mine came to visit me after I'd had surgery on both arms and was feeling a bit grotty - she tidied my hair and put make-up on for me. I can't tell you how much it improved my mood!
14. Practical things: shower gel, moisturiser, cleansing wipes.
15. Books to read (I really mean recommendations for my Kindle, as I'm not up to holding a real book for long these days) - nothing too hard on the brain. I'm not talking Dostoevsky or other Great Literature.
16. Small craft projects - I spend a lot of time knitting, but anything that occupies a few hours is a blessing.
17. Cups, mugs or straws: I have star-shaped bendy straws, which brighten the chore of drinking soluble medications or Ensure (bleuggh!). Many years ago, Richard gave me a pink plastic cup with fairies on it and a straw that curled up the outside. My fluid intake probably doubled as a result of that cup!
18. Jokes. The weaker the better. My brother is an absolute expert at this - we have been exchanging cheese-related jokes (and science jokes, but I won't bore you with those) for months now. What do you call a cheese that doesn't belong to you? Nacho cheese (not your cheese!)
19. Balloons. These are cheerful and colourful, and generally just wonderful!
20. A soft or colourful pillowcase, stuffed toy, microbead cushion or other tactile/cuddly thing.
BUT:
Really and truly, your company (either real or virtual) lifts my spirits more than you could ever know. That text that took you about a minute to send brightened my mood for hours, and I read it at least ten times; the half hour that you spent chatting to me over a coffee helped me to get through the day, which was otherwise filled with pain, struggling for breath,etc. Hospital can be a very lonely place, and the days and nights can seem unbearably long, especially if symptoms are severe. You can't change any of the crazy tricks that my body is playing on me, but you can certainly help the way that I view my life.
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
Wednesday, 9 November 2011
The Hospital Bag (a Tangent)
I'm in hospital. Again.
Actually, I'm not just in hospital, but in my usual bed on my usual ward, and all the nurses are pleased to see me. I'm grateful for the welcome, but there's still a part of me that feels ashamed and saddened to be recognised as a regular in my local hospital.
One of the things that has made a huge difference to my quality of life despite the frequent (and sometimes lengthy) hospital admissions has been having a Hospital Bag.
This baby lives in the corner of our bedroom - forgotten, but still providing quiet comfort that I will have everything I need for the next admission. It takes away all the anxiety of having to try to ask someone else to gather up the necessary things in an emergency, and allows me a few creature comforts in addition to the usual basics.
So let's take a look inside!
What you see here is enough to keep me going in hospital for ten days. Everything lives in the bag, and it stays packed in this order so that other people can find things for me if necessary.
Can you tell that I like spots?
I'll give you a full contents list at the end of this post, but for now, let's take a look at some more pictures!
Clothes: The pile on the left is pyjamas, t-shirts in the middle, and trousers on the right.
All the clothes are light, because hospitals always seem to be excessively warm. The t-shirts have short sleeves for easy blood pressure measurements and easy access to IV lines.
Two pairs of the trousers are light yoga trousers and the third pair is denim. I do love my jeans, though they're not as comfortable as the yoga trousers for lounging around in hospital. The yoga trousers are easily rolled up to expose knees and ankles for physiotherapy.
Most of the rest of the bag is taken up with medical kit. I like to have my own alcohol gel, peak flow meter, oxygen saturation monitor and blood glucose meter. The boxes above the peak flow meter contain medication that isn't commonly used (I have an allergy to Salbutamol/Albuterol) - I can't take the alternative, so I like to have a good supply with me.
The pink spotty bag contains a few doses of all my other medications and a list of what I take, the dose, and the frequency.
The green spotty bag is just a wash bag.
The little extras include a salt grinder (I like my food salty, and need to eat lots of salt to keep my blood pressure up), scented body lotion, plastic bags for dirty laundry, and a couple of lipsticks! I used to carry a notepad and pen, but recently I have just been typing everything straight into my iPhone.
So there you have it.
Enough underwear for 10 days
6 t-shirts with short sleeves
2 pairs yoga trousers, 1 pair jeans
Supplies of regular medications, along with a list of names, doses and frequencies
Wash bag (toothbrush, toothpaste, razor, shampoo, comb, deodorant, eyeliner, mascara, lipstick)
Monitoring equipment: peak flow meter, sats probe, blood glucose meter
Alcohol gel and wipes
Scented body lotion, lip balm
Food: I always carry salt, and sometimes also have saltine crackers, nutrition bars, mints, ginger chews and glucose tablets. I know some people who bring tomato ketchup and tabasco sauce!
Plastic bags - I can't emphasise enough how useful these are!
Netbook, headphones, power cable, phone charger, kindle and charger (sometimes my DS too)
Earplugs, Sunglasses (in case of migraine), eye mask
Look out for a post tomorrow about the best things to take if you're visiting a friend in hospital (especially if that friend is me)!
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
Actually, I'm not just in hospital, but in my usual bed on my usual ward, and all the nurses are pleased to see me. I'm grateful for the welcome, but there's still a part of me that feels ashamed and saddened to be recognised as a regular in my local hospital.
One of the things that has made a huge difference to my quality of life despite the frequent (and sometimes lengthy) hospital admissions has been having a Hospital Bag.
So let's take a look inside!
What you see here is enough to keep me going in hospital for ten days. Everything lives in the bag, and it stays packed in this order so that other people can find things for me if necessary.
Can you tell that I like spots?
I'll give you a full contents list at the end of this post, but for now, let's take a look at some more pictures!
All the clothes are light, because hospitals always seem to be excessively warm. The t-shirts have short sleeves for easy blood pressure measurements and easy access to IV lines.
Two pairs of the trousers are light yoga trousers and the third pair is denim. I do love my jeans, though they're not as comfortable as the yoga trousers for lounging around in hospital. The yoga trousers are easily rolled up to expose knees and ankles for physiotherapy.
The pink spotty bag contains a few doses of all my other medications and a list of what I take, the dose, and the frequency.
The green spotty bag is just a wash bag.
The little extras include a salt grinder (I like my food salty, and need to eat lots of salt to keep my blood pressure up), scented body lotion, plastic bags for dirty laundry, and a couple of lipsticks! I used to carry a notepad and pen, but recently I have just been typing everything straight into my iPhone.
So there you have it.
Enough underwear for 10 days
6 t-shirts with short sleeves
2 pairs yoga trousers, 1 pair jeans
Supplies of regular medications, along with a list of names, doses and frequencies
Wash bag (toothbrush, toothpaste, razor, shampoo, comb, deodorant, eyeliner, mascara, lipstick)
Monitoring equipment: peak flow meter, sats probe, blood glucose meter
Alcohol gel and wipes
Scented body lotion, lip balm
Food: I always carry salt, and sometimes also have saltine crackers, nutrition bars, mints, ginger chews and glucose tablets. I know some people who bring tomato ketchup and tabasco sauce!
Plastic bags - I can't emphasise enough how useful these are!
Netbook, headphones, power cable, phone charger, kindle and charger (sometimes my DS too)
Earplugs, Sunglasses (in case of migraine), eye mask
Look out for a post tomorrow about the best things to take if you're visiting a friend in hospital (especially if that friend is me)!
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
Tuesday, 8 November 2011
Three Truths and a Little White Lie
1. I have had a perfectly round 100 attempts to get an IV line into me this year alone. I think it's time to stop those doctors muttering their vague thoughts about 'maybe you should get a port or PICC' and actually encourage some action, don't you?
2. Not only have I studied medicine and physics, but I also took evening classes in patisserie. I love Albert Roux more than is appropriate, given the age difference between us.
3. I play euphonium, oboe, piano and harp - purely for pleasure now, though I seriously considered ditching the idea of studying medicine for a career in the performing arts. Aberdeen University had a very tempting exchange programme with the Paris Conservatoire when I was making my university applications, but the distance from the south coast of the UK to the northern end of Scotland was too great, and traveling on the train with a harp is a pain.
4. My cat has a perfect internal clock - she will bat my face with her paws at 7 am (waking up time), will wail incessantly at 6.30 pm (dinner time) and will sit on the stairs with a hopeful look on her face at 10.30 pm (bedtime). For good measure, she is scared of strangers, apart from paramedics, who need her supervision while they're looking after me.
Best guess as to which is the lie?
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
 |
| Actually, this is an arterial line, but I couldn't find a pic of my IV lines! |
2. Not only have I studied medicine and physics, but I also took evening classes in patisserie. I love Albert Roux more than is appropriate, given the age difference between us.
 |
| Chocolate flowers dusted with gold lustre |
3. I play euphonium, oboe, piano and harp - purely for pleasure now, though I seriously considered ditching the idea of studying medicine for a career in the performing arts. Aberdeen University had a very tempting exchange programme with the Paris Conservatoire when I was making my university applications, but the distance from the south coast of the UK to the northern end of Scotland was too great, and traveling on the train with a harp is a pain.
4. My cat has a perfect internal clock - she will bat my face with her paws at 7 am (waking up time), will wail incessantly at 6.30 pm (dinner time) and will sit on the stairs with a hopeful look on her face at 10.30 pm (bedtime). For good measure, she is scared of strangers, apart from paramedics, who need her supervision while they're looking after me.
Best guess as to which is the lie?
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
Monday, 7 November 2011
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.
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.
Subscribe to:
Posts (Atom)