Pillow Fights Pyjama Vlogs and Blanket Forts!

So guys guys guys...

I found this really awesome group of people...

It all started with a girl called Lizzie...

Lizzie had a chronic illness, and was part of several online support groups, the type of which I am sure you'll recognise. Mostly full of miserable, self pitying people who wallow in their illnesses and generally make each other feel worse instead of better. I mean, it's always a risk when you get a load of chronically ill people together, as there's bound to be issues, but my friends, there is a better way than wallowing! You are not a hippo, wallowing rights are reserved for hippos only!

So... What is this 'better way'?! I hear you ask...

To be honest, it pretty much says there what The Pillow Fort is all about, it makes chronic illness suck less. Cause let's face it, chronic illness is a bit rubbish- however, you can acknowledge the rubbishy parts and still maintain, or at least try to maintain a positive outlook on life. The Pillow Fort is about realistic positivity, not airy-fairy optimism, nor self-pity parties, but a perfect balance between the two. The website features an online magazine, a blog, and an awesome little shop where you can buy extremely cool things... I bought these slippers!

But the best bit about The Pillow Fort is the online community attached to it- The Pillow Fighter's Club. It's free to join, and they have a Facebook group full of AMAZING people all living with chronic illnesses, conditions, and disabilities, both physically and mentally. I have made so many friends through The Pillow Fighter's Club already, including the lovely Isabel, who gets a shout out cause she's amazing and awesome and inspired me to start vlogging again.

Which reminds me...

I have something to tell you...

I'VE STARTED VLOGGING AGAIN!

I am continuing with The Pyjama Vlogs series, as I like the idea of making chronic illness vlogs, as I've found people like Isabel, Bree, and Kelly's videos to be so helpful and amazing. Here is episode 4:

However I'm also starting another video series called 'Pet's Corner' as I'm moving house tomorrow... and I'm taking two of my three pets with me to my new place, so I'll be filming pet care videos as well. The first of which is this one:

So guys, check out The Pillow Fort, join The Pillow Fighter's Club, and subscribe to my Youtube channel!

Pretty please with a cherry on top...?

Alley-Cat
xxxx

© Alice Daley 2014

The Perils of Insomnia (gorillas come at night)

My Gorilla keeps me up at night, it’s his favourite time to play. He pours boiling acid onto my skin, so that it itches and burns me, he stuffs cotton wool into my head so I can’t think clearly enough to deal with the racing thoughts that clatter through my brain. Sometimes, he lays next to me in the bed, making me uncomfortable by shifting and wriggling and fidgeting around. Sometimes I let him take the bed and take the chair, because it can be more comfortable like that.

But the worst is when he gets tired too, and then he gets really angry. He starts squeezing my chest and pounding my head with his giant powerful firsts, and sometimes will full on shake me violently for minutes on end. I can’t seem to knock my gorilla out with sleeping medications, or if I do manage to knock him out, he sleeps on top of me for most of the next morning, so I am unable to even wake up properly until after lunchtime.

I try to distract myself from him sometimes, by writing or drawing or reading, but sometimes I’m too tired and in too much pain to even think or do anything, I just have to lie there, silently sobbing until the agony finally subsides enough to let me pass out for a few hours.

It doesn’t help that my gorilla needs me to take frequent naps throughout the day, which means it doesn’t let me sleep at night as much. I’ve tried to cut out these daytime naps but then my gorilla gets super grumpy and doesn’t let me do anything for the remainder of the day, until I get a chance to sleep. On days after I’ve not had a nap the day before, my gorilla follows me around closely, sometimes making me carry his entire weight on my shoulders, until I am in crippling agony and utterly exhausted.

Do you have any insomnia tips or hints? I’ve tried most of the conventional ‘have a milky drink,’ or ‘turn off all digital devices an hour before you go to bed,’ ideas and none of them seem to work for me as of yet, but hopefully once my pain is under better control, I’ll be able to get some decent shut eye.

Alley-Cat
xxxx

You don’t have to be healthy to lead a fulfilling and successful life. You don’t have to put your dreams to rest because you are ill or disabled. They may be simply on hold, until the time comes when it is right to achieve them. In the meantime, quit waiting- be inspired by new dreams and ambitions, and work towards them with the grit and determination I know you have. Your life is not over, simply different. Let a new way of life begin and embrace it- live each day as fully as you can, and always be thankful for at least one thing a day.

©Alice Daley 2014

Being friends with someone who is chronically ill

Being friends with someone with a chronic illness is hard work, it really is. They appear to be demanding, they cancel plans last minute, they give the impression of being self-absorbed or selfish, and they seem to be too dependent. I am going to attempt to advise you in how you can maintain a friendship with someone who has a chronic illness. If you want to read more about my personal struggles with friendship then click here, but for now I want to try and keep things fairly generic.

I’ve written this based from my own experiences with my friends, witnessing the struggles they face when they try to maintain a friendship with me, and my own struggles when trying to be understanding towards my own friends who have chronic illness. This isn’t directed at any particular person or group of people, these are just general observations that I’ve picked up over the past few years whilst I’ve been ill.

First thing to remember:
Your friend probably realises that their illness makes them a hard person to be friends with, and they probably feel really, really guilty about it. They’ll feel as if they don’t deserve you, and as if they’re ruining your life by being ill and (in their mind) forcing you to be friends with them. They’ll probably beat themselves up over their over-dependence, their unreliability, and the way their illness affects your relationship with them. The worst thing you can do is to make them feel guiltier by telling them how hard it is for you. You have other, healthy friends to support you (I hope!) but the chronically ill person does not need you telling them how hard they’re making your life- not helpful.

Second thing to be aware of:
Your friend feels isolated and lonely, due to the fact their illness limits their ability to participate in activities. Be sensitive towards this, and be understanding when they express feelings of abandonment and loneliness. They understand that you’re not intentionally leaving them out of things, but that doesn’t make it any less difficult for them. I realise it’s unreasonable for you to cater all your activities to their needs, but perhaps schedule in a time when you can visit them at their home and, if they’re well enough, do an activity with them. Make time to spend time with them rather than expecting them to fit in with your plans- after all, you are the healthy ones and they have the limitations that their illness puts on them. However, don’t make a surprise visit as many chronically ill people need time to prepare for visitors, as they will usually need to rest prior to having visitors and afterwards as well. Try not to stay longer than your friend can manage- shorter, more frequent visits are preferable. And try not to go on to them too much about all the fun activities you’ve been doing, as it is probably quite painful for them to hear.

Third thing you should know:
Your friend understands that you can’t be there for them as much as you’d like to be. You’re a human being, you have your own stresses and strains and issues to deal with, and your friend understands this. Contrary to popular belief, your friend is unlikely to be bitter that you’re not there as much as either of you would like, instead they understand that they are a difficult person to maintain a friendship with, and they are incredibly grateful for any time you can spare to spend with them.

Some things you can do:

1. Even the small things such as taking a picture of something they’d like and sending it to them can really cheer someone with a chronic illness up. If you think of them, send them an uplifting text or email, it doesn’t have to be long, even a line saying you were thinking of them can mean so much to them.

2. Send them post (mail.) I know as a chronic illness sufferer, receiving letters or parcels always brightens my day and fills me with excitement, so if you can, send your friend something.

3. Ask if there are any practical ways in which you can help, for example if they need anything getting from the supermarket when you do your shopping, or whether they’d be grateful if you mowed the lawn, or whatever practical help they need, if you can lend a hand then do, you have no idea how much it means to a chronically ill person to have offers or practical help.

4. Try to include them as much as you can. If you’re planning an event, perhaps think about how you can adapt it so that your chronically ill friend can attend- look into wheelchair friendly venues, restaurants that cater to dietary requirements etc. and if your friend is unable to leave his/her house, perhaps see if they can attend via skype. Obviously I’m not expecting you to plan every single social event you have around your chronically ill friend, but a little consideration for these things goes a long way.

5. Understand that your friend may have to cancel their plans last minute. With a chronic illness you never know if your health is going to be in crisis. A bowel problem, a sudden migraine, a seizure- anything could happen that could cause them to be late or unable to attend events, which can be extremely frustrating for them, especially as most people with chronic illnesses look forward to their little outings and events. So if possible, try to postpone or rearrange an event that your friend cannot attend last minute, it will mean so much more to them than if you just carry on regardless. What might seem like a pretty negligible meeting, to them might be the only social interaction they’ve had in months.

6. Rely on your other friends. Friends are for support, however it is unlikely that your chronically ill friend will be able to support you as much as they’d like. They may be able to listen to you and offer advice, but sometimes their health means that they have to focus on themselves before they can worry about other people. This may make them seem self-absorbed or selfish, but they don’t mean to be, it’s just that sometimes all they can focus on is surviving. Make sure you have other friends around you to support you, so if your chronically ill friend is unable to, you have others to turn to.

And finally, treat them like you would any other friend. Your friend probably doesn’t want it to appear obvious that you have to treat them differently because of their illness, so try not to be too different around them. If you laughed and joked before they got ill, then laugh and joke with them, if you had heart to hearts over a cuppa, then don’t stop doing that, try to make them feel as normal as possible, and remember, they want to maintain the friendship just as much as you do.

I hope this post has been helpful to those of you who have friends with a chronic illness,
lots of love to you guys
Alley-Cat
xxx

© Alice Daley 2014

Supplements and other medications to try

A close friend of mine who’s had ME for a long time, has suggested a few different supplements to me which I’m going to try in due course, because at the moment, I just want to try anything that’ll make me feel slightly better. The supplements and medications he’s suggested to me are:

• Magnesium Glycinate – Apparently many ME patients are magnesium deficient, magnesium is used up by medications, pain and stress and so it may help to replace the magnesium in your body. You start by taking 100mg once daily, increasing your dose by 100mg every 4 days until you reach bowel tolerance (that is, until your stools are long and sausage like, but not loose) and then stop at that dose. If your stools become loose after an increase in dosage, then decrease your dosage by 50mg and stop there.
• D Ribose – This is good for energy replemishment. 5g is to be stirred into a drink, three times a day. It can cause nausea initially but when it works, it has a good impact on your energy levels.
• Epsom salts foot baths – I’ve been told that these are really good for inflammation, pain, and burning sensations. I’m looking forward to trying these.
• Pregabalin – If the Gabapentin doesn’t have any effect, then hopefully this related drug which is used to treat neuropathic pain will do the trick.
• Nortriptyline or Amitriptyline – Both tricyclic antidepressants used to treat chronic pain. I was on Amitriptyline before until I overdosed on it, and since that I’ve become a little scared of it to be honest, but I’m willing to try it again now I’m in a much better place mentally.
• Buscopan – Suggested to me as a way of treating IBS symptoms, I’ve tried it briefly before but didn’t really give it a chance to work properly before giving up on it. Apparently it can also be used to treat muscle spasms and cramps.
• Baclofen – Could also be used to treat muscle spasms and cramps, if Gabapentin and Buscopan don’t work.

Obviously I want to try some of these suggestions, as if they work they’d really improve my quality of life. However I don’t really want to become dependent on medication, as silly as that sounds, because I kind of want to get better on my own. However, I may at some point have to face the facts that any ‘getting better’ I’m going to do is going to be helped along by some helpful and relevant medications that will help to manage my symptoms in a way that will allow me to lead a more productive and fulfilling life.

If you’re interested in any of these supplements or medications, leave a comment and I’ll get in touch, see if my friend has any more information on them and how they worked for him. Or you could just Google it!

I love you guys!

Alley-Cat
xxxx

I was playing a game the other day when I had to travel across London on the tube (an experience that made me so ill I do not wish to repeat it again anytime soon) of how many Londoners could I make uneasy, simply by smiling at them. The results were astonishing- instead of smiling back at me, they looked at me as if I’d just shot a puppy! A smile is contagious, and it costs nothing. Studies have shown that smiling can increase your mood, so even when you’re feeling low, try to remember to smile. If you smile at another person, you might just make their day. I love it when I make eye contact with someone and they smile at me, it makes me feel all warm inside. So if you’re prone to looking a bit sulky most of the time, or even if you’re just feeling down, try to smile, you never know who might see you!

Disclaimer - Obviously because I am recommending medication, I must warn you that these medicines might not have the desire effect for everyone and for some, might even worsen symptoms of M.E. I am not a medical professional and these are just suggestions based on experience and recommendations from friends in similar situations, if you have any doubts consult a doctor or search the internet for more information. This post is intended as advice, not an instruction, and so ultimately the choice to take these medications falls to you as individuals, please do not lay blame on me if your body does not respond well to these treatments. Thank you

©Alice Daley 2014

The Fault In Our Stars Movie Review

 I had been waiting for the book to be written and published, following every Vlogbrothers video and tweet, pre-ordering it as soon as I could, and once my copy arrived I’d finished reading it the same day! It made me laugh, it made me cry, it made me feel every emotion and took me on a journey I will never forget. ‘The Fault In Our Stars’ is my ‘Imperial Affliction,’ I could read it over and over until the end of time.

I followed every video, every update, every leak, every tweet about the movie, I counted down the days and the hours until I had my chance to see it and boy was it something! I sobbed my heart out through so much of the film, and going to the cinema took up so much of my energy, but it was so worth it!

Best parts about the film:
1. The casting
Shailene and Ansel were the PERFECT Hazel and Augustus, they fitted the roles perfectly and had an amazing on-and-off-screen rapport. My other favourite casting was Lidewich, the actress Lotte Verbeek was an exact replica of the Lidewich I saw in my head when I read the book.

2. The egg-throwing scene
So brilliantly executed, you can see this scene online as it is an authorised teaser that was released before the movie, but it had me in stitches of laughter, especially as Monica’s car is an obnoxiously awful shade of green.

3. The music
I really enjoyed the soundtrack to the film had some great music in it, and I especially love the Ed Sheeran song ‘All of the Stars.’

4. The feels
I felt the same emotions during the film as I did in the book, even though I know the story almost word-for-word now, I still felt like I was experiencing it for the first time.

A couple of things they could have done better (or at all!):
1. They missed out the scene with Isaac and Hazel in the hospital, and I was really looking forward to seeing that scene as it was one of my favourites in the book.

2. I didn’t think they put Van Houten’s character across very accurately, and there was a lot of deviation from the book during the Van Houten scene in Amsterdam.

3. They changed some of the small random details for seemingly no good reason whatsoever (for example they make Augustus a year older in the film than he is in the book) and although it doesn’t impact on the movie, it kinda bugs me.

All in all though, the film was fantastic, and as soon as it comes out on DVD it will be mine! If you haven’t seen or read it yet, I’d encourage you to check it out, because it is one of the most insightful, inspiring, life-changing books you’ll ever read. And don’t just go see the movie without reading the book, because although the movie is amazing, it still has nothing on the book, in my opinion.

Big loves,
Alley-Cat
xxxx

Start treating yourself like you would treat your closest friend and a lot of things will change. If she told you she was ugly, what would you say to her? Would you tell her she was beautiful and had the prettiest eyes you’d ever seen? Start saying that to yourself. What if she stopped eating? Would you support her and encourage her to try and eat something, tempt her with her favourite foods, tell her it will be okay? Of course you would! So start doing that for yourself. What would you say if she told you she was hurting herself? Would you beg her to stop, tell her she’s worth so much more than that? Look in the mirror, and start telling yourself the things you tell your closest friends. Because you are unprecedentedly outstanding, a true masterpiece, and until you start believing it, you’re your own worst enemy.

©Alice Daley 2014

Make Pine Cone Hedgehogs

This is a great little craft to do with children of any age. I made it up when I went to visit my sister and her family and my two year old niece picked up a load of pinecones in the garden. I looked at the shape of a pinecone on its side and to me it looked just like a little hedgehog!

You will need:
• Foam or felt, cut into small triangles
• Miniature pompoms
• PVA glue or glue stick
• Glitter
• Googly eyes

So here’s how you make them:
1. Collect as many pinecones as you would like hedgehogs (I recommend about 5, to make a cute little family)
2. Set them out on a table on top of some newspaper, and pick out eyes and a nose for each of your hedgehogs
3. Facing the hedgehogs with the wide end towards you, use the glue to stick on the pompom nose, and the googly eyes
4. Pick two felt or foam triangle ears for each of your hedgehogs, and apply a little glue to one edge of the triangle (an adult may need to help you) and stick them into the first available gap back from the end of the pinecone.
5. Now use the glue to cover the spikey pinecone prickles on the hedgehog’s back.
6. Finally sprinkle glitter over the backs of each of your hedgehogs, and leave them for half an hour or so for the glue to dry properly.

Et Voila! An easy-to-make cutesy little family of hedgehogs for you to display (they go great in Christmas trees) or play with (but beware of the small parts) until your heart is content!

Alley-Cat
xxxx

Don’t be afraid of spending time alone, it is a healthy thing to do. Turn off your phone, shut down your laptop and just spend some time with yourself. Get to know yourself, because knowledge is power, and the more you know about you, the more you’ll understand yourself. And if you find things you don’t like, make an effort to change them- for you’re not a completed sculpture yet- still clay in the potter’s hands. But as he moulds you, he works out the deformities, the blemishes, and the imperfections, as long as you are empowered to affect a change within yourself for the better. Self-discovery is the key to self-improvement.

©Alice Daley 2014

Medication Update

So I went to the doctors earlier this week, and the GP I saw there was actually lovely- she really listened to me and treated me with respect and sympathy, but most of all she did what I asked her to! I’ve been getting a lot more seizures recently, and so I was looking into what other ME patients used to control their fits and came across a drug called Gabapentin. It is an antiepileptic which put me off to begin with because I don’t have epilepsy, however it is used to control nerve pain and migraines as well as seizures, and as I struggle with all three, it seemed logical to suggest it to the doctor.

I was really nervous about going to the doctors, because I’ve had so many bad experiences of horrible GPs that didn’t listen to me or were dismissive and abrupt, but as soon as I hobbled into the room she set me at ease. We talked a bit about my medical history and current medications, and then she agreed that Gabapentin was the best way forward. There are some other medications I’d like to try to control some of my other symptoms, but the GP suggested that we try one new thing at a time, or we won’t know what’s working on what!

So, as of today, my medications are as follows:

• Beclametasone Dipropionate Easi-Breathe CFC Free Inhaler 100 micrograms per actuation. Two puffs twice daily.
This is my asthma preventer inhaler. I use the easi-breathe variety because sometimes it hurts my hands too much to press the cartridge or normal inhalers down.

• Salbutamol Sulphate Easi-Breathe CFC Free Inhaler 100 micrograms per actuation. Two puffs up to four times daily.
I’ve been having to use this a lot more recently, which suggests I need to have my preventer dosage increased, must book an asthma nurse appointment.

• Co-dydramol 10/500mg tablets. For chronic pain. Two tablets four times a day.
This is for my pain, it controls it pretty well and the only notable side effect I have is constipation, which I don’t always get because of my IBS ish symptoms. I find this medication works much better than it’s cousin co-codamol.

• Cyclizine 50mg tablets. For nausea. One tablet three times a day before meals.
I used to be on Metoclopramide for nausea and sickness, but apparently you’re not supposed to prescribe it to young people, so I’ve been changed back onto cyclizine. This is an anti-histamine used as an anti-emetic which I get on very well with, I take it about 30 minutes before each meal and it really helps me with keeping my food down.

• Gabapentin 100mg tablets. For pain, migraines and seizures. One tablet three times a day.
I’ve literally just started on this tablet, and I’m supposed to increase my dosage by 100mg each dose after each week (eg. 100mg three times a day for a week, then 200mg three times a day for a week etc)

• E45 cream. For itchy skin. Apply twice daily.
Been getting soooooo itchy recently, especially with this humidity. As my skin is so sensitive, it needs regular moisturising and E45 really does the trick!

• Microgynon 30ED. For Period regulation. One tablet daily.
This stuff has very few side effects that I’ve noticed, though a friend of mine said she had mood swings on them, but I have those anyway so who knows!?

• Kalms. For mental health. Two tablets three times a day.
I’ve switched to a herbal solution for my mental health and it’s worked wonders. Kalms are made up of hops, valerian and Gentian, they have no side effects and I’ve felt loads better since coming off my strong and nasty mental health drugs.

So yeah, that’s a fairly impressive list of meds. But they all do their job, and I’m hoping to try some new ones in the future, after I’ve gotten settled with my Gabapentin dosage.

Alley-Cat
xxxx

Be strong, even in the times where you feel like giving up, when it all feels too hard keep holding onto something, anything. If you have faith, cling onto God, if you have good family and friends, cling onto them, and if you feel you have nothing, cling on for me. I believe you can do it, and it will not be this bad forever, you’re still growing. Don’t try to be more than you are, stop striving for more and accept who you are today. Don’t even worry about tomorrow, because each day has enough worry of its own. Instead, focus on the small blessings that come with each day, and they will see you through to brighter days.

©Alice Daley 2014

Radio Northants and Rushden Youth Centre

Well hey there guys!

So recently I tuned into Radio Northants, a radio station from the heart of Rushden, by request of my good friend Sam. I met Sam last September, where we worked together for Nottingham Youth for Christ for a couple of months. Sam is an aspiring youth worker whose dream is to open and run a youth centre in his hometown of Rushden.

Every Wednesday, Sam hosts a local radio show alongside Radio Northants’ very own Lindsey, who hosts a sports show on the station, which you can tune in live to here, every Saturday from 3pm until 6pm. The RYC Live show runs from 7pm until 10pm and is filled with chat, music and more! I tuned in for the first time this week, and I really enjoyed listening to it, especially as I got a mention, and several song requests- eek!

I gave them an extract from this blog to read out, and they’ve asked me if I could do a piece for each week, which I’m really excited to be a part of! The extract this evening was from a very early blog post, on the subject of happiness, which you can read here. So if you have any topics or ideas you’d like to see mentioned in these little snippets and radio appearances, then let me know!

I admire Sam’s ambition to dream big, there aren’t many 18 year olds out there who’d have the guts or the focus to put all their effort into one goal, and stop at nothing to achieve it. Rushden Youth Centre was a God-given vision and I believe that it will happen and flourish, with enough prayer and support from people both through practical and financial help, to spiritual support and advice. I’m really excited to see what the future holds for RYC in the future.

Sam’s been a great friend to me through a lot of things, and I’d like to think I’ve supported him in the same way. I’m delighted to call him one of my best friends and I’m super proud of all the hard work he’s put in so far. But he needs your help! Setting up and running a youth centre costs money, and lots of it. Though he’s planning many a fundraising project, including a 365 mile bike ride (for a boy who doesn’t even run for the bus, that’s a big challenge, but one I believe he will succeed in!) to raise funds for the centre, it would be great if you guys had even a spare couple of quid to donate to this awesome project.

There’s a fundraising page set up here, take a look at it, and also visit the Rushden Youth Centre and Radio Northants Facebook pages, or give them a positive tweet, I’m sure they’d be glad to hear from you! Also, if you happen to live in or near Rushden, and fancy donating some of your time, I’m sure Sam would be more than happy to accommodate you with some worthwhile things to do!



Meanwhile, I’ll get to work on writing some more uplifting segments for inclusion on RYC Live, which will now appear at the bottom of each of my blog posts, like the Daily Encouragement used to, and then maybe consider sleeping (I’ve been sleeping terribly recently, getting all sorts of itching and burning pains, which really suck)

So, until next time, stay strong my lovely fighters!

Alley-Cat
xxxx

Take time to notice things around you, go out into nature and appreciate what’s around you. If you’re unable to go outside, perhaps open a window to let some air in, or ask a family member to go out and take some nature photos for you. Look at all the details, and then look again at the bigger landscape, how it all knits together so perfectly. If you’re able to walk, go for a gentle walk alongside a river, as water can be very soothing to the soul. Think, reflect, take some time away from it all and get back to nature’s roots.

©Alice Daley 2014

Gorillas can be problematic

So today I was having a discussion with my friend about how her chronic pain gorilla sometimes wanders off at the most inconvenient of times. For example, right before she goes to the doctors, he'll sit in the car munching bananas and refuse to get out. And I realised that my gorilla does this sometimes too- for example, if I'm about to see a friend, and I've told them I'm not doing too well, my gorilla will beat me up something rotten before I see them and then wander off, so my friend's reaction is 'well you're not that sick!'

It can be really frustrating when people can't see our gorillas, because then they don't understand how unwell you are at times. Very few people see me at my worst; lying in a darkened room unable to sit up in bed, struggling to eat or drink or think or move, sometimes even to breathe, in agony, only able to scream silently because the noise hurts so much, wondering if I'm going to die. No, barely anyone sees me when my gorilla is beating me to a pulp, jumping up and down on the bed on top of me, pummelling my head with his big gorilla hands. No, the people that choose to believe my gorilla even exists usually only see him when he's on his best behaviour, or when he's wandered off for a while.

People of the world, know this: Just because things look okay outwardly, does not mean there is nothing going on inwardly. Just because our gorillas aren't playing up something awful, doesn't mean they don't exist. One good day is not recovery or remission, and though a few lucky ones recover from chronic illness, the majority don't.

This isn't about negativity, it's about realism. Some people have such warped views in relation to illnesses like ME, yet are so supportive of people with other, better known, chronic/terminal illness such as cancer or MS. Why do we treat some disabled and ill people so differently to others? To me it makes no sense. Now I'm not saying I'd rather have another illness, I just feel there is some equality required.

Here are some quotes which might change your opinion of ME and its severity:

• “The people with Chronic Fatigue Syndrome are in fact profoundly ill. They are as disabled as anyone with AIDS, with breast cancer, with coronary artery disease.”
  William Reeves from the CDC
• “I split my clinical time between the two illnesses (CFS and HIV), and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.”
  Dr Kilimas
•  “ME/CFS is actually more debilitating than most other Medical problems in the world, including Patients undergoing Chemotherapy and HIV Patients (until about two weeks before death.)”
  Canadian ME/CFS Consensus
• “I have treated more than 2500 AIDS and CFS patients over the past 12 years and my CFS patients are MORE sick and MORE disabled, every single day, than my AIDS patients are, except in the last two weeks of life!”
  Dr. Marc Loveless
•  “Research has shown that M.E. has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or haemodialysis. It is comparable to end-stage AIDS, i.e. to how ill and disabled an AIDS patient is 2 weeks before death.”
  Hooper and Marshall
• “Can you imagine not sleeping for 48 hours, then running a marathon with a hangover and a dose of flu? That’s how it can feel to have ME.”
  Ceri Isfryn
• “My son has said that he would rather have a disease like cancer or diabetes that is not only treatable, but that people can understand….. I felt like a horrible mother for “wishing” that they would find “a nice simple brain tumor” when they did his MRI of the brain.”
  Dr Donnica

So next time you judge someone because their gorilla is having a good day, or tell them they're not that sick, think again. Behind closed doors they're fighting a battle with their gorillas on an hourly basis. They may not tell you they're struggling because they may not want you to worry, they may feel guilty for complaining all the time, or even just feel guilty for being ill in the first place. They may feel ashamed of their gorilla and tell you he's been behaving well recently, because they don't want you to know the cold hard truth for fear you won't believe them, that you'll judge them, blame them, or make ridiculous recommendations or suggestions on how they can get better. Instead, be kind to them, give them space and time, if they don't keep in touch as well as you'd like them to, don't worry, they're probably just too exhausted to communicate. Also, try not to express your concern over their well-being, as this can cause feelings of guilt within a chronically ill person; feeling bad for making people worried about you is the worst feeling. Besides, what did worrying achieve anyway? If you really want to help them, don't tell them you're worried about them, but instead encourage and build them up, perhaps get them something that make their dark days seem a little brighter. Treat them as you would any other human with a debilitating illness, and try not to aggravate their gorilla too much!

Hope this has helped some of you,
Alley-Cat

P.S. if you're wondering why I keep mentioning gorillas, read either of these posts:
Disability is like having a Gorilla in your house
Frustration and Acceptance (with added gorillas)

P.P.S. I found the quotes through this blog, you should go check it out:
Living with CFS

© Alice Daley 2014

Hospital Admission Book

Hi there guys, now today I wanted to talk to you about something I’ve found to be quite a useful tool when dealing with my ME at its most severe, when I’ve struggled with communication and suchlike. I got the idea from an excellent book called ‘Severe ME, A Guide to Living, by Emily Collingridge.’ It is the concept of having a little booklet made up for you, for use by medical professionals (GP’s, doctors, nurses, physioterrorists *cough* I mean therapists…) so that they know your medical history, conditions, medications and so on, without having to ask you the same questions a hundred times, especially if you need to be admitted to hospital for any reason. I’ve found it a brilliant thing to have with me, and although sometimes, some muppet doctor refuses to read it, for the most part it works a treat.

So what do I include in my ‘Hospital Admission Book?’

·         Firstly, your basic details: name, age, date of birth, address, height, weight and so on. These are things you’re bound to get asked over and over in hospital, and if you’re exhausted and struggling to communicate, it’s so useful to have these details on the front of your booklet, so they’re easy to find.

o   Most importantly, make sure any and all allergies or intolerances you have are on the front of your booklet, in bold type, so they are clear to see.

o   The front of the booklet is also a good place to put down your next of kin details, and an emergency contact number (if different from your next of kin.) It’s important to have this information on your booklet as if something awful were to happen to you, (which I hope it doesn’t!) medical professionals need to know who they can contact. If you have carers, it may be useful to have your carer’s or care agency’s details on the booklet too, as they will probably know a lot about your care needs.

o   Don’t forget to put on your GP details, as the hospital will need these to access your medical records and to forward information on during and after your admission.

·         Secondly, your medical information: Be sure to list all your conditions (even co-morbid ones such as ME and POTS or IBS) and give a brief description of how severely they affect you and how they affect you.

o   If any need further, more detailed explanation, you can include a page reference and explain the illness in full on a separate page. This initial list of medical conditions if supposed to be quick to read and understand, so that a doctor can glance at it and then continue treating you.

o   On a separate page, make a list of all the medication you’re on, including the dosage and how many times a day you take it. Where necessary, include what time of day you take it, as hospitals usually have four drugs rounds (morning, lunchtime, dinnertime and bedtime) and some people react badly to their drugs being given at a different time to what they’re used to.

·         Thirdly, special needs: It is important that the hospital recognises you may have specialised needs whilst you’re an impatient, and the earlier on these needs are established the better.

o   Problems such as light and sound sensitivity should be noted, as well as any dietary intolerances and whether assistance with feeding or personal care is required. If incontinence is an issue, the hospital should be aware of this too.

o   You may also want to point out that you may be less able to do things in the hospital environment due to the extra stimulation and change in routine (as well as whatever you’re in the hospital for in the first place!)

·         And finally, any other paperwork you might have regarding your illnesses or conditions. If you have a written care plan or a daily routine, that would a perfect resource for the hospital to use in order to try and treat you to the best possible standard of care.

o   You may want to get ‘official references’ from your regular medical team, in order to validate all the information in the booklet you have written, as some medical professionals can accuse people with multiple, complex, or co-morbid diagnoses of not being truthful when it comes to their health. Disgusting behaviour if you ask me, but it is best to prepare for the worst. It’s a good idea to have your GP sign the booklet to show that all the information in it is legitimate and correct.

o   You may also want to include details of any previous admissions, and details and/or results of any tests or scans you’ve had over the years, as these can come in handy.

Now I think that pretty much covers everything you need to put into your ‘Hospital Admission Book,’ obviously you can add and subtract from these guidelines as you see fit, and ensure you have several copies with you when you are admitted, one to put in your notes and a few to hand to anyone who hasn’t bothered to read them! If there is a lot of information in the book, perhaps condense it onto a single paged document with the most important points on, to hand to paramedics and the like.

Also, don’t forget to keep your book up to date, and also if you have any other information books about your illness (especially if it is little-known like ME) bring them with you- some of the more open minded doctors will be willing to flick through them, as well as some inquisitive nurses, and after all, education breaks down ignorance.

Take care, strong fighters!

Alley-Cat

© Alice Daley 2014

Frustration and Acceptance (with added gorillas)

So recently I've been getting more and more frustrated with myself, with my illness and with my situation. I've gotten cross that it's not fair, that I've lost my health and my youth, that I might never be able to do the activities I once loved again. I frequently get angry with myself for being unable to do things and I feel useless so much of the time when I can’t complete even simple tasks, tasks that most people don’t even think about. I find myself becoming exasperated and overwhelmed when I get too tired to finish something, and I hate asking for help with anything. I am a very stubborn person, and I don’t like to appear weak to anyone, not even my closest friends and family. I like to give the impression of having it all together, when really inside I’m usually falling apart. Obviously sometimes this mask falls off and people get an insight into the broken, bitter character I’ve become, and I hate that. I hate people saying things like ‘oh you poor thing,’ and I hate feeling pitied. I am not to be pitied. I am a strong, independent fighter who will always keep going, I may need your empathy at times, and sometimes even a bit of help, but don’t you ever pity me. For I have more joy in my life than so many, and so much of my joy comes from the smallest things- a butterfly’s wing pattern, a cuddle with my cat, a good chat with a close friend, a decent cup of tea. I may not always be a happy person, but I endeavour to always be joyful, through every circumstance.

Yet there are times when I am not joyful, when anguish and anger consumes me, where I shut out those I love, and lash out at those who try to help me. There are times when I feel so small and helpless and purposeless that I struggle to keep on going. And that’s okay, because I’m a human being, and a far from perfect one at that. I don’t intend to be a role model to anyone, more of a realistic representation of what life is like, because it’s not always fun and it’s not always fair and sometimes we just have to accept that.

We can exhaust ourselves by fighting your gorillas, (see ‘Disability is like having a Gorilla in your House’) each and every day of your life, by trying to win their cooperation through force and stubbornness, but if you’re anything like me, it just doesn’t work. You end up exhausted and your gorilla ends up angry and you invariably cause a relapse or a decline in your health. I was talking with a friend of mine the other night about acceptance of long term conditions and illnesses, and we came to the conclusion that the best strategy we’ve found for dealing with our gorillas is to invite them in, give them a spot on the sofa, offer them a cup of tea and embrace them. Not literally of course, because these aren’t literal primates that will waltz into your living room, but to continue the metaphor, the trick, we’ve found, it to accept your gorilla and try to continue with your life as you did before, but making provisions for your gorilla as well.

We could easily sit around waiting for our gorillas to leave, but they might never leave, and what’s a life wasted on waiting for things to get better if anything but a tragedy? It’s time to quit whining that it’s not fair, that we want to be better, that we don’t want our gorillas any more, and start accepting that this is the life we’ve been given. And we’ve got to work with what we’ve got, whether that’s a little or a lot, because at the end of the day, we are alive, and that calls for us to at least try to make something of ourselves, to make a difference in the world. For me, my biggest motivation is that my efforts will hopefully prevent others from having to go through what I’ve been through, that my determination will pay off in improving the lives of others. The fact that I could help someone, gives me the strength to wake up in the morning. I’m not trying to be preachy here, and I want you to know that sometimes it fails, sometimes I hurt people instead of helping them, or I help them for my own selfish agenda, or I cannot be bothered to even give someone a little time for a chat because I’m too caught up in my own misery to care. But on the days I do make a difference, when I do contribute to someone else’s happiness, when someone thanks me for something I’ve done, I feel like I can fly. Because I’m not useless, even with my gorilla in tow, and neither are you.

You might have a mental health problem, that impacts on every single thought and action of your day. You might think because of your poor people skills or your anxiety, that you’ll never be able to help someone. But I am telling you that you can. It might not be now, but maybe in a couple of years’ time, someone might ask you how you overcame your anxiety, and you can share your experiences with them. Or maybe you smiled in the street one day at someone, and that person’s remembered that for the rest of their lives. You don’t know how every little action of yours impacts the world, and even if you feel helpless and powerless to affect a change, I can assure you that you do. And you are so strong, because you fight against an invisible gorilla, which nobody can see, and yet you are still here, reading this post, and you’re still fighting every day. Don’t stop fighting, friends, because you are so much stronger than you think. I’m not going to sugar coat it, or lie to you, tell you ‘it gets better’ because it might not. This might be your life forever, and you may never feel any better, but unless you stick around, how are you going to find out? Come on, join me for the ride, and when you fall to the ground for the thousandth time, I’ll still be there beside you, with a hand to help you up again.

You might have a long term health problem, or a chronic illness such as M.E. and feel that each task you have to do in the day is nearly impossible, that you can’t go on like this anymore, and that you’re never going to achieve the things you wanted to. And maybe you won’t, maybe you’ll never go to that country or climb that mountain or become that athlete that you wanted to be, and it is okay to grieve that dream. We think of grief as being exclusively related to death, that you grieve the loss of a life. But in a way, chronic illness is the loss of a life- the life we’d planned, the life we wanted, the life where all our hopes and dreams and ambitions are fulfilled, where we are able to make choices dependant on our wishes, rather than our health. And I am giving you permission to mourn your lost life. I am giving you permission to get mad, to get sad, and to not understand. You don’t have to understand the pain you’re going though, you don’t have to like the pain you’re going through, but once you’ve screamed and shouted and cursed the world, the hardest part is accepting that this may be your life; this may be all you get. There might not be any pot of gold at the end of the rainbow, it might not get better, but you have to keep on trying, because what else can you do? And I am so proud of you for getting this far, and I believe in you, I believe you are more than capable of keeping going, and I am going to be here for you no matter what.

You see, acceptance isn’t about giving up hope of a better life, it’s about understanding that you can’t just wait around for it to all get better, for someone or something to come along and fix you, because the world is not a wish granting factory. As a Christian, I might urge you to pray for healing, but whether you are healed or not is out of my hands, and you cannot put your life on hold whilst waiting around to be healed, because that is such a waste of life. As a Christian I might also say that because Earth is only a waiting room for eternity, and in comparison to the time you’ll spend in your healthy body eternally, the pain you suffer on earth is negligible. But as comforting as it is to know that one day, if you do believe that Jesus died to save your life, so that you could enjoy the gift of eternal life, you’ll enjoy a new body, forever, it doesn’t actually change your earthly experiences. You might feel differently about them, and if the knowledge of a suffering free eternity makes you view your time on earth more favourably, then credit to you, I am unable to see this in my own life, as much as I would like to.

There is a well-known saying, that life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain, and really, that’s the sentiment I’m trying to get across. Life isn’t about waiting for your gorilla to go away, it’s about teaching him to respect you, and adjusting your life to accommodate him. And you will have good days and bad days, like we all will, days when the gorilla will entertain himself and not bother you too much. But there will be the days when he beats you up repeatedly and you will get through them. Sometimes all you will be able to do is survive, and that’s okay. But maybe, just maybe, as you learn to accept the limits of you and your gorilla, you’ll start to live once more, you’ll dream new dreams, make new plans, and have a life once again.

Don’t lose hope, chronic kitties,
Alley-Cat

© Alice Daley 2014

Introducing Rupert Edward

No, I've not had a baby. Rupert, also known as Eddy, is my new furbaby.
My darling Oscar had to be put to sleep in December 2012 due to an abscess in his mouth which was stopping him eating, and although he was an old cat who'd lived a long and happy life, it was still very painful to lose him.

However, I recently decided to get a new cat from the RSPCA, as I feel it's wrong to buy a cat from a breeder when there are so many needing homes in rescue centres all over the country. We only had to visit the centre once, before I met Eddy. He looked remarkably like Oscar, which put me off initially, because I didn't want to feel like I was replacing him, but as time went on, he seemed a perfect match. Many of the other cats for adoption were about to have kittens, or were kittens themselves, and though to start with I was interested in getting a kitten, I realised that the kittens would be snapped up eagerly by loving homes. A slightly older cat though, may not be so lucky, as he's not as cute and fluffy as an 8 week old kitten. However, something about Eddy caught my dad's attention, and he pointed him out to me. When I approached his pod, he seemed so eager to rub up against the glass and get to me, that I felt sad he was so cooped up in there. I asked a staff member for some more information, and found out he'd been removed from a home due to cruelty which made me sad. He was a very nervous cat when he first came to the RSPCA centre, but he settled there once he'd got used to his surroundings. The staff member asked if I'd like to go into the pen with him to get to know him and it was lovely, I took a few pictures:

I filled in the adoption application there and then, and I wanted to take him home with me the day I met him, but I had to wait for a few things to be sorted out first. So I spent my time making the conservatory (his room) as kitty friendly as possible, with toys and a litter tray and a comfy sofa with a soft blanket for him.

We brought Rupert home at the end of April, and he's settled pretty quickly. Estimated to be about 18 months old, Rupert's still very much a playful kitten, and quite a small cat. His favourite toy is is fishing rod, closely followed by his catnip mouse. I've put together some pictures of him, from his car journey home to fairly recently. He's my little buddy, and I love him to bits.

Love you all lots, Alley-Cat.

© Alice Daley 2014