The Memory Jar

So here we are; at the beginning of a new year. A time when we all get reflective, thinking back on the year that has passed, and often boldly claim that next year is going to be better. 

If only we had such control. If there is one thing life has taught me it is that we cannot control it all of the time. Life happens. And if you'll excuse me... shit happens. Living with a chronic illness this is often one of the hardest things to come to terms with. But what life has also taught me is that we can to some extent control how we deal with life and the things it throws at us. 

 

Having lived with a chronic illness since the age of 14 and with M.E for nearly 4 years now I have always tried to be as positive as possible. And when I could to make things happen for myself. But at the end of last year I pledged that I would actively appreciate life. I thoroughly accepted that life can be hard and that overall the situation I am in being chronically ill is one that can easily make you despair. However that's no way to live your life. A quote that I try to live by is...

 

 

So to help me do this. Last year I did a memory jar. A memory jar is where you write down any good/ lovely/ amazing/ funny things that happen. Whether it's an achievement; something funny your child says; a nice day out; a great quote; tickets to events you've been too; cards or letters you receive. Then you place them inside the jar and at the end of the year you open it and read through them all. You can use any jar or box and of you like to be crafty decorate it how you wish. Or get your children to decorate it so it's extra special.

 

My Memory Jar

Personally I use a cookie jar in the shape of a house. I'd like to think that it's a symbol of housing my memories but actually it was just something that happened. I read through all of my notes on New Years Eve and it made me feel really appreciative of what I have done this year. Some of my highlights were:

 

* Welcoming twins (a boy and girl) into the family. My heart melts every time I see them.

 

* Going on holiday

 

* Organizing Team Princess and raising over £4000 for charity as well as much needed awareness

 

* Going to watch Pasha from Strictly Come Dancing and meeting him afterwards

 

* Meeting up with a friend I had met online, Ali and her family and our friendship growing stronger

 

* Having a lovely birthday party with family

 

* Some lovely "spa days" (it's in brackets as wasn't whole day

 

* Making more friends 

 

I've even learnt a new skill in learning to make jewellery and have enjoyed being able to make pieces for friends, family and even for charity.

 

Then their were smaller achievements, that actually for me were quite big considering my health. Like:

 

* Making a cup of tea/ food

 

* Getting downstairs for 4 days in a row

 

* Leaving the house

 

In a year in which my health has got worse and I've seen the house fill with more mobility aids and adaptations, being able to see what I have achieved written down. It's about living life one day at a time and not generalizing a year. Because if you classify your time into years chances are you'll focus mostly on the negative. 

 

 

I would recommend starting a memory jar to anyone. Too often we can forget about things that have happened that at the time made you really happy. Whether they get swept away with the busyness of life or totally overridden by a sad event that happens that year. It's about learning to live in the moment or one day at a time and not generalizing a whole year all together. Because if you classify your time into years chances are you'll focus mostly on the negative. And yes sadly there are years that are going to be worse than others, and you may spend a lot of the year feeling sad. However in general if you live life from day to day you can learn to say 'well today was not good, but hopefully tomorrow will be better.' One quote that I like to bear in mind during the roughest of days, and one I have passed on to a few friends when they have been struggling is: 

 

 

Or a funnier version is this one:

 

So although we cannot always have control there are little ways in which we can try to live a more positive life. To appreciate the things that are good. And learn to think more objectively about the things that you can and cannot control. 

I look back on that list above and through all the notes that were in my memory jar and I'm amazed. I've achieved so much. The bigger achievements have required better health and a lot of rest and recovery time but there are things that I've also managed when I was stuck in my room, like making jewellery and raising money for charity. It makes me think how great that list would be if my health was better.  So, just think how fantastic your list could be? What's particularly important to me is that I'm happy and as someone that has struggled and can feel that they are trying to stay a step ahead of mental health problems that to me is priceless.

I now keep all the notes from 2014 in a box as a keepsake, as shown below:

So now to start on filling my 2015 jar. I'm also going to try make more notes in my diary to see daily achievements and track my progress. 

Will any of you be starting memory jars?

Sian x

* For the rest of the month I'm going to be blogging about mental health and then in February I'll be blogging about some more ideas on ways to promote more positivity. So if a memory jar doesn't sound like your cup of tea you might find something else then that does. *

Dreamland Heat Pad

 

Since the age of 14 I have pretty much had a hot water bottle strapped to me. So much so that I have had some pretty interesting markings going on. Almost a leopard print design on my tummy and lower back. Luckily animal print is in fashion. I have had trainee doctors (and some trained ones) almost reaching for the quarantine forms suspecting some tropical disease. But those with plenty of experience, especially gastro doctors, on seeing this will ask;

                                             "Do you use a hot water bottle a lot?"

 

I have had one registrar tell his students (after calling all 20 of them on the ward to come look, yeah thanks) that these markings are caused by prolonged use of hot water bottles and that it can therefore be an indicator of the amount of discomfort the patient has been in. As I mentioned gastroenterologists tend to pick up on this as they see a lot of patients with tummy troubles that have been using hot water bottles to ease the pain.

 

 

As an M.E sufferer again my hot water bottle has been a constant friend to help ease aching muscles, sore back, tummy troubles, neck pain, shoulder pain. Even just to keep me warm when I'm feeling really cold especially my ice block feet. The problem though was I couldn't fill it myself. So every few hours, even through the night my parents were having to fill it up again.

 

Then not long ago a close friend told me about Dreamlands heat pad. She had just got one and was loving using it. Especially as she suffers a lot with back and leg pain. So she was straight away recommending them to all her spoonie friends and being the hot water bottle fiend that I am I just had to investigate. And ever since it has become my new best friend. Sorry old faithful hot water bottle I have moved on. I just love it. 

 

I have it on for the majority of the day if I'm having a bed day and also use it if I'm downstairs on the couch. I find heat is incredibley soothing for my aching muscles. And what's more unlike a hot water bottle I can lie on the heat pad to target my lower back or neck and shoulders, which you can't do with a hot water bottles. Because it has 5 different heat settings you can also control the temperature to find what suits you best at different times. If I need it on whilst I'm asleep then I put it on a lower temperature so that I am still getting the benefit of the heat but not waking up in a sweat. 

My Mum is also a big fan because she is not getting texts every few hours to make a new hot water bottle. Especially during the night. I can simply switch the heat pad on as and when I need it (pretty much ALL the time). All that's needed is a power socket nearby. I even take mine abroad with me. It might be 35°c but I still need direct heat to sooth my aches and pains at times. Especially if I am stuck in bed. But that's where being able to control the temperature helps. The only times it can't be used is obviously when you are not close to a power socket. The cable is quite long though so you have a little bit of leeway. But curse you Premier Inn not having a power socket by the bed. So there are still occasions when the hot water bottle comes in handy. If I'm visiting someone for example. 

 

I think that the biggest concern that a few people raised was "are they safe?" Of course you do hear stories about electric blankets causing fires. What makes the heat pad safe is that it automatically switches off after 3 hours. Honestly this product has really been such a big help. To someone who spends most their time in some amount of pain it certainly helps take the edge off the pain. Especially when the hours between pain killer doses seem to be dragging. Based on my recommendation my sister and Nanna have since purchased one and my occupational therapist is considering getting one, as well as suggesting them to her other patients.

 

So if like me you are in constant need of a hot water bottle or experience chronic pain I could not recommemd the Dreamland heat pad enough. They are available from Amazon, Boots, Argos and John Lewis and priced £29.99.

 

Do you own one? If so what do you think? Or are you now considering getting one? Let me know what you think if you do.

Sian x

 

Product images from www.johnlewis.com (Other than the one of my pins)

It's the little things

Having a chronic illness as you can imagine you have to deal with some pretty big things. Exhaustion, pain, disability, the loss of your independance. But within those all consuming symptoms there are a number of smaller symptoms, or should I say oddities? Little things that can actually have a big impact on our health at times. Here is a short list of some of the little ways my body likes to remind me I'm a sick chick.

1. What you get up to in your dreams can determine how exhausted or in pain you feel the next day. And often our dreams can be very vivid. Cue smutty jokes.

2. Colours can be too bright. This Summer's neon trend was eye watering at times. And too long in the kids toys section can induce a lovely migraine.

3. You cannot go anywhere near the washing detergents aisle in a supermarket for the smell.

4. Music and sounds can make you really ill. Especially music with a heavy bass.

5. You will no longer be able to tolerate the smell of some foods

6. And with that no longer be able to eat them. Goodbye roast dinners.

7. Socks can be painful.

8. As can close fitting leather (pleather) boots

9. But you need to wear socks almost all of the time because your feet get really cold. And not just 1 pair.

10. I usually need to wear long trousers because my lower legs get really cold too. Pants tucked into socks anyone?  If I'm wearing a dress I'll usually end up with a blanket

11. On hot days you can be shivering and wrapped up in a blanket.

12. On bad fibromyalgia days a sheet can actually feel very heavy and cause pain.

13. As well as the feel of your clothes on your skin. Equally uncomfortable.

14. If you're typing and watching telly or listening to a conversation at the same time you will end up typing what's being said.

15. Taking straws with you when you go out because you can't always lift a glass or cup. Especially for hot drinks at home or out. No one wants to spill a hot drink down themselves.

16. Headbands, headphones and eardefenders feel like they are squishing your head.

17. And headphones and ear defenders make your head pound so much they make you feel so sick. That renders them completely useless even though the noise you're trying to block out is making you ill too.

So that's just a few things that affect me. What odd symptoms do you experience?

Sian x

Travel interview with Emma

Today's travel interview is with Emma and is an interview with a twist, because she had a holiday abroad and here in the UK. So today you are getting the best of both with a home and away account and comparison. Hopefully anyone that doesn't feel up to travelling abroad can get some insight into what it's like to holiday over here. Also because Emma doesn't use a wheelchair or walking aids she isn't visabley disabled so it's an insight into coping when you could easily be mistaken for fit and healthy.

 

 

 

Name: Emma
Illness: Chronic Fatigue Syndrome/ME
Destination: Zante, Greece
Who did you travel with? Friends
What airline did you use? Fly sun wing.. I think! 

 

First of all, how was your holiday? My holiday was fantastic, the most fun and happiness I've experienced in a long time.

 

What was your biggest worry before travelling? And how did you overcome it/ justify it? Gosh, I had so many! Firstly flying, I'd not been on a flight in 15 years and had been scared too in my early teens, so this caused the first of my worries which turned out ok in the end as I really enjoyed it. Seeing the world is something I want to do and getting on a plane is a fact of life to do so. The excitement about the destination outweighed the worry in the end. 

 

Did you notice any changes in your health whilst away? Good or bad? Any new symptoms? I don't know if it was luck or the change of scene, but I felt quite well most of the week and was able to socialise most of the day all be it around the pool, but still that's not something I normally find easy without needing massive rests and bringing on all kinds of symptoms.

 

How was Tsilivi as a resort/ destination in relation to your illnesses/disability? (Access, flat, close to restaurants etc, quiet) when we arrived at the hotel, we were greeted by a staircase and steep drive, initially this panicked me as I couldn't lift my suitcase at all, luckily the staff took our bags up to reception and up to our rooms later. I found I managed well getting around the hotel, we were on the first floor and I didn't need to go up and down very often. The area of Tsilivi is mostly flat, at least what I saw. The town wasn't very close and I did struggle the one time we went down. The beach was a short stroll again not ideal but there's plenty of taxis around at really cheap rates so it wasn't really an issue.

 

 How did you find attitudes/perceptions towards you by other travellers and from the locals? I got one bad reaction from a fellow passenger when I was asking for help to lift my bag but otherwise no one thought I was different or acted different towards me as my illness is pretty hidden. 

 

From your experience(s) what piece(s) of advice would you pass on to other spoonie travellers? Don't push yourself just because you're on holiday, yes there's lots of lovely things to see but it's ok to go home and to have seen only one of those things. 

 

What items would you not travel without? Earplugs, eye mask and pain killers. I use Earplugs and an eye mask everyday but I would recommend to anyone who doesn't to take them with you. The plane is pretty loud and if you have to share with other people it's worth using them for noise and lights. The hotel I stayed in was very quiet at night, in fact when in my room I couldn't hear any other guests at all which is very important if you're sound sensitive. 

 

What are your favourite holiday beauty products? Garnier Ambre Solaire Aloe Vera After sun. I bought this a while ago after burning in the uk and found out how much it left my skin feeling smooth so now I use it as a cooling body moisturiser all the time. It's great to cool you down in the summer heat.

 

If you were to go on holiday again what would you do differently? I would worry less in the weeks leading up to it! 

 

How are you after the holiday? I lost my voice from the aircon on the plane and was very sleepy and kept falling asleep in the afternoon for about a week after.

 

Do you think that despite all the extra 'hassles' of travelling as a chronically ill person it is still worth it? Yes, totally 100% worth it. Personally being housebound most of the time I find I get very bored of the same four walls, I loved seeing a different area, somewhere my eyes had not seen before. I also think getting away from normal life is something we all need especially if you're chronically ill, for that week I left my worries that haunt me day in day out at home and found myself almost carefree (as much as chronic illness allows) and laughing so much, and they say laughter is the best medicine.

 

And here is Emma's interview after her trip to Cornwall.

 

 

 

Destination: North Cornwall
Who did you travel with? My mum

 

First of all, how was your holiday? It was lovely, I always feel so at home in Cornwall.

 

What was your biggest worry before travelling? And how did you overcome it/ justify it? The 6 hour car ride. It's always a draining time for me, but the beautiful beaches and country is well worth it.

 

Did you notice any changes in your health whilst away? Good or bad? Any new symptoms? I didn't feel well on the way down and the next day I woke up with an awful cold which my mum then got too. We spent a lot of time feeling ill together but otherwise my ME wasn't too bad, colds always make it worse to an extent but I wasn't as bad as I can be.

 

How was Cornwall as a resort/ destination in (Access, flat, close to restaurants etc, quiet) relation to your illnesses/disability?  We stayed at a family friends holiday home which is all on one level so no stairs. The beach is really close too which is great. The towns are good too as they're mostly flat.

 

How did you find attitudes/perceptions towards you by other travellers and from the locals? The same as most places. I went out for lunch one day with my mum and the waitress was telling my mum about a lovely walk and said she could show us the way if we would like, my mum said not to worry as I'm not well which sparked a very odd look. I could tell she was trying to workout what was wrong with me! This happens anywhere though.

 

From your experience(s) what piece(s) of advice would you pass on to other spoonie travellers? If you travel to north cornwall try and go out of school holidays as places like Padstow are a spoonie nightmare when the streets are full.

 

What items would you not travel without? Ear plugs, eye mask and water colour paints - if we go on holiday via the car I always take paints for quiet days.

 

What are your favourite holiday beauty products? Aftersun, fake baked body scrub

 

If you were to go on holiday again what would you do differently? I'd try not to get a cold! If I had the chance I would fly, half an hour on a plane beats the 6 hours in the car!

 

How are you after the holiday? It took me a few days of being housebound before feeling a little less drained.

 

What advise would you give for surviving long car journies for spoonies? If you can try and rest the day before traveling and if like me mornings aren't your best time try and get whoever you are traveling with to agree to a slightly later start.

 

Other than the location of course what where the biggest differences in holidaying at home and abroad? The weather, here I needed a hot water bottle at night as it was cold and the cold was setting off my leg pain. The beaches in the UK are much more enjoyable as there isn't music being played from beach bars or men trying to sell you knock off watches every 5 minutes! 

 

Did you find that there were was a bit more pressure to find things to do with a home holiday? Not at all, I've been going to Cornwall with my family for 7 years. We're all happy going to the beach or kicking back reading books.

 

Was there a difference in how your symptoms/ energy levels were in Zante and Cornwall? Surprisingly to me my energy levels were better in Zante than cornwall, my energy levels are always hit and miss and I think I got lucky the week I was in Zante.

 

 How did your PEM compare after each holiday? After Zante I kept falling asleep every afternoon for a week, I felt so tired. It took me about the same time to feel 'over' both holidays though.

 

Thanks again to the lovely Emma for doing the interview. You can read more about Emma and check out some of the fabulous outfits on her blog.

 

Sian x

Invisible illness week

 

Unfortunately I've not been able to prepare a dedicated post to mark invisible illness awareness week, which  was this week 8th-14th September. I've been trying my best to finish other posts that I'd been working on for weeks and feeling really rough, with 3 days of being bed bound. However what I can do is to use this week as a jumpstart. 

 

For a while now I have been thinking about the reasons I started this blog, one of which was to raise more awareness and to let more people know about an illness that they'd perhaps never heard of before. Mainly because there is not a lot of help out there and a true life account is the most honest way to share what it's really like to be chronically ill. Being told that you have a condition that you have never even heard of is frightening. You would think that an illness that can be so disabling would be more common knowledge but sadly there is a lot of misconceptions and untruths in what little understanding there is. So I wanted to share the truth and perhaps create a little corner of the internet that could help other sufferers, new sufferers and friends and family of sufferers to help nurture understanding.

 

 

With this in mind I have been wanting to branch out a bit (there will be a lot of branching going on hopefully in posts to come) by featuring lots of other chronic illnesses that a lot of people have never heard about. What I want to do is to educate myself and others about more invisible illnesses and share them on my blog. To try and raise more awareness.

 

I already have a few in mind. Some of which I have experience of and I will be doing more mental health posts. However, I would like your input. Do any of you suffer from a chronic illness other than M.E or Fibromyalgia? Would you be willing to share a little of your story and information to help educate others? Even links to charities, organizations, blog posts and articles you have found helpful would be much appreciated. You will be credited of course unless you want to remain annonymous. Your help will be gratefully received. Please contact me in the comments or through gmail. If we can raise more awareness and educate people then all the better.

 

 

Lastly I created the photo at the top of this page after seeing a similar post that my friend Olivia did. These photos were taken on the same night. Now looking at the photo on the left if people didn't know better they would assume I was healthy but the truth was I was only out of my chair for 2 minutes to take the photo. Even the photograph in the wheelchair does not portray the whole picture. It says I have a disability but does not portray the days of being bed bound, needing care every day and the lack of independence. In both photos I'm the same level of ill but who would guess? The point is we never know the full story and therefore shouldn't judge. Many of us are fighting silent battles behind closed doors. But when we do go out we crave that little bit of normality that we don't get to experience often.

 

 

I have wrote other posts on invisible illness and M.E before so please do have a read of them too.



 invisible illness week 2013

Am I Invisible

 

In my 2013 post I say that the best way to educate and spread awareness that is truthful is to read the blog posts of sufferers. Below are links to some of the blogs I read regularly, all written by some very lovely people that are doing a sterling job at raising awareness through their bravery. As you can see there's a fair few. All ladies though, I need to discover some male bloggers. Come on fella's.

 

All About ME by Alison

Meg Says by Meg

ME, Myself and I by Anna

The Chronic Ills of Charlotte by Charotte

A Life Within An Illness by Clare

Life, Love and M.E by Hayley

Nonsense from my 'home office' sofa by Sophie

M.E and Me by Chloe

The Pillow Fort

Emma's Looking Glass by Emma

Freckles and All by Faye

Katherine and ME by Katherine

Chronic Fatigue & ME by Louise

Let's Pretend I'm Interesting by Poppy

Smell the Roses by Rachel

Spoonie Sophia by Sophia

Around and Upside Down by Vicky

www.chelseyjay.co.uk by Chelsey

Smoothie Spoonie by Lennae

 

Sian

What an M.E crash is like

Lately I have been doing it tough health wise. Or should I say tougher than usual. So I thought it would be a good time to write about crashes and flares. Although due to the flare it's taken me a good while to write.

You may have heard many sufferers talk about having a crash. Now to most people, myself included, that conjures images of them having been involved in a road traffic accident. But what is actually meant by the term is a sometimes literal crash to the ground of their health, energy, concentration. It can often signal the onset of M.E if you are previously undiagnosed and can be known as a trauma. This is what happened in my case, which you can read more about here. Other traumas include infections, accidents and bereavement. Something that will stop you in your tracks and knock you off course.

Once you have M.E, crashes can happen frequently. They can be triggered by an overload of activity or what our brains perceive as such. Many of us aren't physically overloading ourselves (by which I mean often next to nothing and the most active thing being going downstairs) however there seems to be a fault in our nervous systems that tell our bodies there's too much going on and they need to shut down in order to cope. As well as chemical changes such as adrenalin levels. Crashes can also occur from an overload of emotion or too much activity going on around you. For me personally my biggest trigger is loud music, in particular really bassy music. You know the stuff with the really thumpy bass. It makes my whole body reverberate and feel like I'm being thumped, and torn apart, which causes agonising muscle pain and the feeling I'm going to pass out and a crash can come on in a matter of minutes.

Often there are warning signs but they never really prepare you for them. Because when your body decides to crash, that's it going into hibernation. Much like a computer that's been on all day with lots of tabs and programmes open. Chronic illness and M.E in particular is a constant series on peaks and troughs that can vary a lot. A crash is when you find yourself at the bottom of one of those troughs. 

Now let me just point out I'm not talking about organs shutting off or failing, and in need of a crash team and defibrillator it's not that dire. What I'm referring to is a power cut of sorts and while it's not critical it can be dangerous, especially when it comes to when and where it happens and it's often very frightening.

A sudden crash can come on without much warning. It may also lead to a flare, where you will experience high levels of symptoms for days or even weeks. Or worse still a relapse, where you struggle to improve for a prolonged period of time. So what happens? For me, I can experience anxiety type symptoms as though I'm about to have a panic attack. My body becomes tense and I can be feeling somehow overwhelmed, like something bad is about to happen. This is the fight or flight mechanism kicking in. When our bodies and brains perceive they're under threat this kicks in to help us get away from any danger. You can often be mistaken for being drunk, because you become very unsteady and start to slur your words. Often drifting in and out of consciousness. My eyes struggle to focus and blinking becomes rapid. Then I start to feel very heavy like I'm being pulled down. And the brain starts to shut off. You close in on yourself. Almost like when you are having an anaesthetic and the anaesthetist asks you to count down. It's not as controlled as falling asleep nor is it the same as being asleep as you still have some perception of what is going on around you. Hearing etc. In fact sleeping at that time can be difficult because of the adrenalin in your body. It is more a matter of different states of consciousness. However, you can literally feel yourself shutting down. It's very scary.

 Your eyes can either be open or closed. However, it's like the lights are on but no ones home. Usually they'll be closed but you may be able to open them up after a while, all depending. As I said my first crash I couldn't open them for 3 days. If your eyes are open then everything is blurry. Regardless whether your eyes are open or shut being able to communicate is difficult. Your ability to speak is lost and it can take a lot of effort to mouth or whisper words. 

Now you'd think that at times like this some of your other systems would shut down. Like your bladder and your thirst. Which as you can imagine when you're feeling completely shut down and unable to communicate well is hard. With your bladder it's again because of the fight or flight instinct, your body wants to lighten itself in case you need to flee. Gee thanks  primeval get me away from woolly mammoth instinct. 

Luckily the other day as I felt myself starting to crash I had made sure I had my phone literally at hand and put it so that when the screen was unlocked it was on my messages. It did take a while to get to that stage to be able to unlock my phone however. And I was only able to press a random letter and send. The problem was that my family thought that I was actually fast asleep. So although they were getting messages they thought I was leaning on my phone. So other people knowing the difference can be a big issue. 

Thankfully they soon realised I needed help. I could only mouth what I wanted. Luckily I have a commode, so as I was downstairs and very weak it was very handy. Of course I needed a lot of help just to sit up and up on to it. I was extremely weak and floppy. Another issue is of course you can be desperate for a wee but don't have the muscle capacity to do it. That's how you know you're weak.

Below I've listed some things that you and your 'carers' can do to help and keep you safe.

Things you can do:

Try not to panic. This will drain you even quicker. Take deep breaths and reassure yourself.

As soon as you start to feel a crash coming on. Get yourself to safety and comfort. Lie down on your bed or a sofa 

Avoid walking too far incase you fall and avoid the stairs. Try to avoid lying on the floor if you can. One because it's cold and uncomfortable and two because it's going to be hard enough to get up as it is.

Have your phone close by. As close to hand as possible. And like I said above ifyou have it set up on phone or messages. 

Maybe set up a sign system with your 'carers' so you can effectively communicate what you want. Or cards with yes and no on them. Obviously develop this on a good day

Also make sure your 'carer' knows your triggers 

If you are out and about, particularly if you are on your own, carry a medical identification card. You could make one yourself, providing information of your condition and what others can do if they find you. Providing contact numbers can also be useful

Stay put for as long as you need too. Do not get up or move until you feel strong enough and only do so with help

The next day spend it resting and doing as little as possible and for as long as it takes for you to regain your strength. Remember this could take weeks, and your post exertional malaise will be even more significant. You may also find that you sleep more

If your relapse is prolonged or more severe seek medical help

Make use of youtube, iplayer, Netflix etc if you can tolerate it, as it's a way to keep occupied but not having to hold up a book etc, which can be painful

Things others can do for you:

Put communication devise by them, if they don't already have it

Stay close

Know the likely triggers of their crash and do what you can to stop it. Example, loud music- put ear defenders on them (if they can tolerate it) or relaxing meditation music can help cancel it out. Try and get whoever is playing the music to turn it down or off

Try to eliminate as much activity as you can around them. Switch off the telly etc

Make sure they're warm or cool them down if they are overheating, a wet wipe or face wipe is useful. Note that temeratures can change quickly too so keep checking

If you do need to lift make sure you lift correctly, bend your knees and try not to hurt yourself

Ask questions, do they need anything? But be specific so that they can nod their heads rather than saying. for example; Do you want a drink? Do you want any painkillers?

If you're giving them a drink use straws 

Sometimes a crash can be due to low blood sugar so get them a sugary drink to help raise it again

For the next few days you will need to be on hand more. You may need to help getting them up, feedin, managing their medication. Especially things that take much concentration. 

Try to make sure that they do not over exert themselves and are resting properly

If a relapse lasts longer than usual or is more severe seek medical help

I have also found this online paper here that can help others understand what is going on in these instances. What signs to look out for and how they can help you. It is well worth the read. Apologies it's been a long one folks but hopefully it's been useful.

Sian x

Why people with chronic illnesses dislike #challenges

First things first. Let me just say this is not a stab at any genuine efforts to raise money for charity. I, perhaps more than many understand the value of charity and how much it is needed. It really should not be the case that it is, when it comes to medical funding but sadly it is and without it many people that are facing a chronic illness would have no hope. I am one of those people. So in no way would I ever dislike such efforts.

The issue comes when a fundraising concept turns into a social media phenomenon. In one way this is great for awareness, getting celebrities involved and sharing with their millions of followers is a fundraising dream. But somewhere along the way the charity and awareness drop off. What was the #ALSicebucketchallenge just becomes #icebucketchallenge. People get caught up in watching famous people scream and then daring their mates to do the same, because 'it will be a laugh,' or you want to get your own back. The illness it's in aid of gets forgotten. It took me a good few videos until I found out it was actually for charity.

The ice bucket challenge was devised to mimic the seizing up of muscles that ALS, or Motor Neuron disease as it is also known, patients experience. A lot of thought went into what would be an applicatble fundraiser for this devastating illness. So to all of you that have done the challenge and actually made people aware of the reasoning behind it and told them how they can also help to raise money if they want to, then I applaud you. I hope you've also donated what you could too.

But raising awareness and funds for diseases should not be about showing off, or wanting to upstage your mates, and forgetting why you're doing it. It shouldn't be about nominating someone, daring them, calling them a chicken if they don't. Charity is about generousity and belief in a cause not badgering. How many times do you pretend to be on your phone because you don't want to talk to the charity people on the street? Saying I nominate you to do this is also saying I nominate you to give away your money. Something I'm not sure you would say to someone, unless they were Bill Gates or the like. Why not just say 'I'm dong this to raise money for ALS and if you would like to donate here's how?' (Details at the end of this post.)

I know, people go to great lengths to raise money for charities that they believe in but the difference there is that they always stay true to their goal and the reason why they are raising money. Often it's personal and they want to make a difference for someone they care about. Charity is personal, it's about giving somebody that little bit of hope that things will get better with that money. How many of you well up at all the video clips on Children in Need and Comic Relief? Seeing charity offer people a chance.

As I said I am one of those people who is currently relying on charities to offer me some hope. To find answers. So perhaps you can imagine where I'm coming from, when I say don't get swept up in a craze without thinking about the difference people are trying to make. I'm not saying don't do it, post that no make up selfie or throw that bucket of ice water but please do so with a responsibility to the charity. Putting your hand in your pocket, or spreading awareness is much more important. And if you tell your mates how they can help too then even better.

So this does not come from a place of bitterness. I'm not in a tiff, thinking 'this should be to raise awareness for...', or 'such and such is a more worthy cause.' Of course I would love M.E to be recognized on that kind of scale of fundraising campaign. And one day hopefully it will be. Jealousy amongst charities is sad. I simply wanted to point out the nature of charity and how it's something that doesn't deserve to be turned into a dare. So please do the challenge responsibley and mention how you can help. Just in case anyone didn't know, you can donate via text message with the following info, no freezing yourselves is required, unless you really want to.

Text ICED55 followed by £1, £2, £3, £4 or £10 to 70070

Sian

Travel interview with Ali

 Today's post is another interview with one of my spoonie friends, the very lovely Alison, who travelled with her husband and little girl to Palma Nova in Mallorca. I think it's great to get as many perspectives as possible of travelling with a chronic illness and this interview has the added perspective of travelling with a child too.

 

Name: Alison 
Illness: M.E
Destination: Palma Nova, Majorca

Who did you travel with? My husband and my little girl
What airline did you use?
 Jet2.com. We also booked the holiday through them

 

First of all, how was your holiday?
Really nice, the sun always helps my symptoms and it was our 3rd time at the same hotel so I knew everything would be good re accessibility etc.  Was nice spending time with my daughter doing things like finding shells on the beach or being in the pool with her.

 

What was your biggest worry before travelling? And how did you overcome it/ justify it?
I was panicking about how much the travelling was going to wipe me out. I had to try to tell myself it would be worth it & had some tips from friends about how to stay calm!

 

Did you notice any changes in your health whilst away? Good or bad? Any new symptoms?
I always find the sun helps with my pain a bit but then, despite hiring a mobility scooter, I walk about more than I should be doing so end up suffering afterwards.  I always tend to sleep better on holiday which may be down to the sun plus doing too much!!

 

 

How was Palma Nova as a resort/ destination in relation to your illnesses/disability? (Access, flat, close to restaurants etc, quiet)
It's a really good resort for wheelchair or mobility scooter users. There are many places to hire disability aids from & it is very flat. The only problem I found was that there were no flat kerbs in some places on either side of road so if you wanted to cross you could get down onto the road but not over again on the other side! Had to try to remember where the sections were that did have flat kerbs on both sides! Otherwise would have to drive on the road which with how they drive over there I didn't fancy!The beach is good as it has a wooden platform with a covered area which you can drive straight onto & leave scooter on (in my case).

 

How did you find attitudes/perceptions towards you by other travellers and from the locals?
Really good mainly. As I am young I am used to getting looks from people when I am in wheelchair or scooter but didn't notice it too much.  People were helpful regarding opening doors & passing me stuff etc if I was on my own.

 

From your experience(s) what piece(s) of advice would you pass on to other spoonie travellers?
Always use special assistance at the airport if travelling by plane.  Makes such a huge difference & makes travelling not seem as daunting or scary.  Also make sure you find out as much as you can about the resort/accommodation & how accessible it is if you use walking/disability aids.

 

What items would you not travel without?
Painkillers!! Heatpads, which I used on my back during journey to help with the pain.  Ear plugs to block out excess noise & eye mask for light sensitivity or for when need rest.

 

What are your favourite holiday beauty products?
Not sure if classed as a beauty product as it's more a necessity but I love Malibu suncream, the smell is yummy! I use anti shine face sheets from e.l.f on an evening, I have to take a few lipsticks & eyeliner, anti frizz hair serum to try to tame the huge holiday hair, I always take some Elizabeth Arden 8 hour cream & will never be without nail polish remover pads & a few polishes!

 

If you were to go on holiday again what would you do differently?
Not panic as much about the travelling as it wasn't anywhere near as bad as I expected!

 

How are you after the holiday?
It took it out of me for a while after getting back.  We had a late flight home plus a horrible experience when the plane was about to land & the landing was aborted due to the weather so that really freaked me out & probably flared my symptoms too.

 

Do you think that despite all the extra 'hassles' of travelling as a chronically ill person it is still worth it?
100%. I would definitely rather have a holiday than not.

 

What are the biggest stresses when it comes to travelling with children when you're chronically ill?
 For me, keeping them safe & making sure they stay with you whilst at airport.  I have always travelled with special assistance so she either walks with us or sits with me on wheelchair. Thinking about all the stuff they will want to do while you're away & knowing you won't be able to is a bit stressful but is more upsetting!

 

Do you have any tips or methods of getting your child more involved with packing etc?
She tried outfits on before we went so she knew what we would be taking & she would be wearing whilst there. She helped fold stuff up & put in case! But other than that, not really. I always pack as much in advance as possible.

 

What are your top tips for keeping them entertained on the journey?
Buy them a kids magazine, they usually come with a gift of some sort & have various puzzles games & stories in.  Colouring pads/pens. I got her a colour your own pencil case in which kept her occupied for ages. And snacks/sweets!

 

 

How do you balance keeping your child entertained and having a good time but also making sure you get the rest you need? Is this something you feel is important to consider when choosing a hotel/ resort?

Make sure you have someone else with you who can do stuff with them!!! ...Our hotel had a children's club which she joined in with a few times but she was quite happy going in the kids pool & we could be at the side to keep an eye on her if didn't want to be in the water.  She was also happy on the beach making sandcastles so I could sit next to her & chill while she did it.  She is 5 so it was much easier than in previous years as she never stayed still! I would preferably opt for a hotel with entertainment so they can join in with kids club in day then disco & games at night rather than try to find things to do with them outside of accommodation.

 

Did you have to make any special arrangements for transfer from the airport to the hotel because you were in a wheelchair? Or did you, or have you ever, encounter any problems about this?
No transfer was (& has been on previous holidays) included in holiday package & they take us on a coach so always room for wheelchair in with the baggage.  If we booked separate flights & ,accommodation though we would have to arrange own transfer.

 

Thank you to Ali for taking part and offering up some insight into what it's like to travel with a child in tow. Although her little girl is angel and very well behaved. You can read more about Ali and how she manages motherhood with a chronic illness over on her blog beingamummywithme.blogspot.com