Wheelchairs, Seizures and Accidentally Angering Gorillas

Ready yourself for a slightly longer post than usual, I had a lot to say...

When you see me in the street, pootling along in Wilbur, my electric wheelchair, you might wonder to yourself “What’s wrong with her?” You might especially wonder this if you see me stand up, with help, and go into a shop (if it’s particularly tight, I can’t get around in the wheelchair.)

Disabled people are expected to be what others expect them to be… if you use a wheelchair, it’s expected that you’re paralysed and cannot walk at all. This is not always the case; there are many wheelchair users who may be able to stand for transfers, or walk a little way. Some may even be able to walk on their better days, but need to use a wheelchair for their worse days. Some may be temporary wheelchair users due to sickness or injury. Everyone has a story behind why they need to use a wheelchair, and each person’s story is as valid as another.

I want to tell you my story, in the light of what’s happened in the last few days. I've been really sick, and oddly, I write better when I'm really sick (in the patches when I'm well enough to write, that is.) I've been in the Local Accident and Emergency Department with an increased number of seizures, and last night the paramedics were called due to me having more seizures, which I didn't regain consciousness between, and which got longer and longer. After deciding that another trip to A&E would cause me to become more ill, the paramedics agreed that I should stay at home, with the people around me keeping a close eye on me. I slept solidly for a few hours, as is common after seizures, and then awoke to a night of torment. It is 6:42am as I'm writing this and I've been awake since around 2:00am in severe pain, with muscle spasms, nausea, dizziness, fever, night sweats; the works. Thankfully my friend David gets up around 6:00am for work, and therefore was able to give me some morphine not too long ago, which has made things a little more bearable.

The thing that’s flung me into this latest relapse? Simply that I just wanted to feel normal for once, I wanted to help out around the house, and I wanted to have fun. I didn't climb a mountain or host a disco, or even try to be completely normal (I still used Wilbur to help me get around,) but I just did a little more than spending each day in bed or on the sofa. I helped to cook dinner, to serve my friends, to look after my friend’s little boy Tom who is 4 ½ and absolutely adorable. Nothing big, but enough to wreak havoc on my body. I don’t know how long it’s going to take me to recover from this relapse, I don’t know if I'm going to be able to start college on Tuesday, or even at all. From a few simple days of trying to have a life again, my whole future hangs in the balance, and I'm scared.

My Gorilla is unpredictable, sometimes I don't even know what's made him angry. I never intend to anger him, but sometimes I have so much fun that I forget to accommodate him and this makes him angry. Sometimes his rage comes straight away, and other times he seems to bottle it up until he explodes into a terrible tantrum. He'll beat me and throw me across the room, he'll dance a jig on my back whilst I'm asleep, he'll trip me or push me to the ground, or shake me violently. The only way to placate him when he gets like this is to lie in bed with him and rest. He is like a petulant child who won't sleep unless you lie down with them, and then, just as you think he's dropped off and you start getting up to leave the room, he wakes up and demands you stay there with him. Even when I give in to him and go to bed, he will still find ways to hurt me, he might wrench my joints so they feel awkward and uncomfortable, or set my skin alight as I burn up into a fever. Perhaps he will sit on my legs until they become numb and partially paralysed, or maybe he will delight in using my head as a punch-bag until I'm sick. The fact of the matter is, if I ignore the Gorilla, he gets very angry indeed. Whereas daily Gorilla management by way of adequate rest, tends to mean he's less malicious for the most part. Gorilla taming tip of the day; don't pretend you don't have a Gorilla and ignore him.

It wasn't meant to be like this. By now I should be halfway through a degree, or training with the horses, or getting married. Every day I feel a sense of deep loss, of what this illness has bereft me of. I cry my heart out because I am heartbroken by my broken body, and I know that as a result of this, and other factors, I have a broken mind too. Depression and Anxiety lurk in the background, waiting for me to have a moment of weakness; wearing me down day by day. No matter how hard I try to ‘think positive’ or ‘just get on with it’ or ‘have more faith’ or man up’ or ‘push through it’ or ‘get better,’ things don’t change. And that’s not because I don’t want them to. I wish, with every fibre of my being, that I would recover from this, that I would get my life back, that I would be the person I've wanted to be, that I used to be. I am grieving my old life, my healthy life. The life where I could ride until sunset, study hard, read a book over a weekend, just do things that ‘most anyone my age could do.

But I can’t get hung up on what could have or should have been, on the ‘what if’s’ and ‘if only’s,’ because I have to deal with what I have in front of me. I have to make the best of the hand I've been dealt, and learn to do things differently. I've got to realise that although I want to do everything most 20 year old’s can, that I need to prioritise what’s most important, and schedule rest into my days. I have to tell myself that if I help around the house, but make myself so ill that I need help with everything for weeks, then I've actually created more work that I set out to help with. It’s going to be difficult because I'm a naturally intuitive and helpful person, and I'm so grateful for the people around me, that I just want to say thank you by helping them out, especially as I can always see when things need to be done, and I get agitated if I'm not able to do them. I feel like I'm being lazy, watching or even instructing others to work. It’s not in my nature to sit and do nothing, and so resting for me is incredibly difficult. I think I need to find a TV series that I can get the box set of, so that I can schedule rest for the amount of time an episode is. Obviously sometimes I'm so poorly that watching something is not restful, it’s actually an activity in itself that saps my energy, but I find it near on impossible to rest without anything to do at all, unless I'm asleep. I become restless and agitated, and I start thinking about all the things I should be doing, and begin to feel extremely guilty for resting when there’s work to be done. However, I need to learn to overcome this, as if I don’t listen to my body and rest, I become very ill, which creates more work for everyone in the long run. I guess I need to view resting as a helpful activity which contributes to the household’s well-being, as with proper rest, there should be fewer trips to A&E, less seizures etc.

I use a wheelchair because after a few steps, I am ready to collapse due to weakness, exhaustion, low blood pressure, dizziness, and pain. I know there are some people that will be thinking ‘the more you use the wheelchair the more you’ll need it,’ and I'm sure for some people, that is the case. Over-dependence on walking aids can result in a loss of muscle tone and fitness, which in turn can mean that a person needs to use these walking aids more and more. When I was bed-bound for 9 months, I completely lost my muscle tone and have never really fully regained it. However, I do as much as I can, when I can, to not be dependent on Wilbur. On very rare good days, I might be able to not use him for a simple trip done mostly by car. But on most days, walking more than a few steps at a time around the house will either be impossible due to collapse, or result in very harmful payback such as seizures and/or partial paralysis. It is plausible, that if I were to not use my wheelchair, that I would be able to survive. However, without him, even the simple things would become so very hard. I would probably spend much of my time being bed-bound, and if I used my limited energy just for the process of getting from A to B, once I got there I would be so ill, I wouldn't be able to do whatever I'm supposed to be, and may get stuck there as I wouldn't have the energy or strength to get back. So don’t look down on me because I use a wheelchair despite not being paralysed, wheelchair users are all different, and all have a different story. It’s not up to you, me, or anyone else to judge that person on their level of ‘need’ regarding their wheelchair. I know that 99% of people wouldn't choose to use a wheelchair, I certainly didn't, and the minute life without him becomes a feasible option, he’ll be gone faster than you can say ‘It’s a miracle.’

If you’re a wheelchair user, or use any other aid, and are subject to dirty looks, people making comments that you’re too young to need aids, or even judgement from other people who think their reason for needing something is more valid than yours, I understand. I've been through it and it’s horrible. When it’s strangers on the bus, you can perhaps brush it off as ignorance, but I know what really hurts is when the people you thought would understand the most, ridicule you because of their own hurts and insecurities. If you've experienced this, I just want to tell you that they’re wrong. I know that you’d never in a million years choose to be sick, or to need a wheelchair or other aid. They have no right to judge you unless they've lived your life, and even then they shouldn't judge you. We spoonies have enough people up against us without us lashing out at each other with judgement and harshness. There should never be any one-upping along the lines of ‘I'm sicker than you.’ It’s unhelpful, it’s childish, and it achieves nothing except making people look like muppets. We should support one another, and care about each other, send messages of love and encouragement rather than ones of spitefulness and hatred. And if you've been subjected to this kind of judgement and bullying from anyone, my heart goes out to you. If someone is going to treat you in that way, you don’t need that kind of negativity in your life, especially if you’re chronically ill. You don’t need to waste your spoons on people who think you’re a malingerer or a liar. Your experiences are valid, I love you and I believe you, hang on in there, you brave, strong little beans.

Alley-Cat xxx

© Alice Daley 2015

A letter to those of you who are healthy (and to everyone else...)

To those of you who are healthy (and to everyone else),

Be kind to your body, don't fill it with toxic substances or unhealthy food. Be grateful for your body, and don't ever abuse it or take it for granted. Go outside as much as possible, drink in nature, run, laugh and shout. Dance in the rain, skip without checking that nobody's looking. Do everything you set your heart on, travel to new and exciting places, spend time with the people who matter. If you've always wanted to learn to kayak, or have plans to go camping with your pals, do it! Squeeze every last drop of vigour out of life, live each moment to the fullest.

Call a friend you've not seen for a while, plan something fun with them and do it. Don't spend the entire time texting other people, enjoy the company that you're in. Aside from the obligatory selfie, just revel in spending time with another human being who is as exciting and intricate as yourself. Laugh together until your bellies hurt, make memories worth having.

Decide to learn something new, a new talent, skill, even a new language. Drink in as much knowledge as possible, and enjoy the process of learning. Meet others who want to learn about the same thing, those with a common interest, and talk to them. Once you've started learning, practice, and then as you get better, show off! Not in an arrogant way, but make sure you're not one of those people who knows how to do something but never does. You're an incredible being, and your brain is so unique and amazing, use it.

Explore nature, even just in the area around where you live. Go to your local park, or even get on a bus, and get off when you see somewhere suitably interesting. Discover birds nests, learn what animals are local to where you live, learn the names of plants and birds, appreciate what a beautiful place this world is. Breathe in the fresh air, take in the smells of manure, cut grass, and pine forests, enjoy the freedom that you can only feel when outside.

Forgive people. Life's too short to hold grudges against people; try not to make any enemies. You'll never get along with everyone, but try, as best you can, to live at peace with everyone. Don't base your values on what you hate, but on what you love, be kind to those you meet, and where you can, spare a little of what you have for those who do not have as much as you. Do beautiful things with beautiful people, and appreciate everyone around you, from the bored looking girl at the supermarket checkout, to the doctor who might one day save your life, they all have their part to play in this, the ultimate ecosystem.

Do these things for yourself, but more than this, do them for people like me who yearn for days, weeks, or in some cases years to be well enough to go outside. Who end up in tears because they can't help those around them with simple things like doing the washing up. Some of us don't know what it is to be well; we were born sick... I can't speak for that portion of us, but I can imagine they've spent their whole lives longing to be able to do what you can do. For some of us, we remember our old selves, almost as another person. We remember being like you, but we feel a sense of loss when we think of ourselves back then. We desperately want to be well again, and our hearts are broken on a daily basis when we remember how much we can't do.

Do these things for me. Use your legs to climb mountains, because mine can barely climb out of bed. Use your arms to hug those you love, because mine struggle to hold a knife and fork. Use your eyes to appreciate the beauty of nature, or to read a good book, because after a few lines of reading my vision goes blurry. Use your brain to learn and drink in knowledge, because I often struggle to even string a sentence together. Use your body to make this world a better place, because I need some allies in my quest with working bodies. I'm asking this of you, because whilst I'm sick, I need you to live my adventures for me, and maybe one day I'll be well again, and we can go on adventures together.

I love you
Alley-Cat xxx

© Alice Daley 2015

Some thoughts on Self-Harm

A blank screen can be really daunting, which is why I’d like to just ramble for a little while, and tell you about some of the changes in my life. I've now moved in with my friends the Scott’s who are a family of 11; it’s an amazing environment full of mad people and animals. I’d been staying with them for a while and they then asked if I’d like to live with them. After weighing up the pros and cons of both living in a family environment and living alone in my bungalow, the decision was pretty obvious. Being surrounded by Christians in a safe environment has done wonders for both my physical and mental health.

Talking of mental health, I had a bit of a blip a few weeks ago and attempted suicide twice in a fortnight. Both times I recovered well and I'm now on the road to recovery, with a lot of help and support from those around me. Today I want to talk to you about self-harm, and so if you’re easily triggered by such matters, I suggest you don’t read this post.

I was trying to describe self-harm to a friend of mine a while back. I thought long and hard and eventually decided that he (self-harm) wasn't like a playground bully, who pushed you over and stole your lunch money. He was more like a two faced friend who manipulated you into doing things you don’t want to do. One day, he will act like your best friend, and then the next day perhaps he would ask you to do something you’re uncomfortable with. But, because you don’t want to lose the friendship, you go along with it, and before you know it, he has complete control of you. You might not recognise or realise that he’s using you like a puppet on strings, but you have a feeling something’s not quite right. You feel like you’re in too deep, and if you upset the balance now, the whole world will come crashing down. It’s just easier to do as he says. You feel like he is just a part of your life now, and imagining life without him seems impossible, and just when you feel you can cut the ties, he entices you back in with false promises and lies. You feel like a fly trapped in a spider’s web, pushed into a corner with no escape, you become resigned to the fact that self-harm will always be there in the background, around every corner, waiting for you. You start to kid yourself with thoughts like ‘If I was in a different job, self-harm would leave,’ or ‘If I had the car I wanted, self-harm would leave,’ or ‘If only I was a stronger person, self-harm would leave.’ You start hoping for your circumstances to change, and sometimes they do change for the better, yet he remains with you, your constant companion; your addiction. You might try to get away from him, run away, hide away, and you might be successful, but you feel like one wrong move, one throwaway comment from someone, one dirty look, and he’ll be right beside you again, luring you into his traps, undoing all your hard work. You begin to feel like you've got no hope. You feel powerless, helpless, and hopeless.

I'm writing this to tell you that there is hope. It might not seem like it at the moment, but I believe in you with every part of my being. Self-harm is still a part of my life, I'm not saying this from a position of authority or superiority, simply as someone who is going through what you’re going through. Someone who is starting the process of recovery, with the help from a whole bunch of people, someone who is saying we’re in this together. I believe we can, little by little, live without self-harm in our lives. I believe that, with the right support from those around us, we can look forward to a life of freedom ahead of us. I believe that my Jesus will help me to live life to the full, as it says in John 8:36 ‘If the Son sets you free, you will be free indeed.’ I wouldn't feel right writing this post without a bit of input with regards to my faith and how much it’s helped me with the underlying issues that have caused my self-harm. I believe that God hand crafted my body, that I am fearfully and wonderfully made, and so to harm what he made, what he gave me, is insulting and ungrateful. If you made the person you love most in all the world a gift, spent a lot of time, energy and effort on it, poured love and care into it, and you saw them deliberately damage or break it, how would that make you feel? It breaks God’s heart when I hurt my body, and I know that I should look after it.

You are amazing, you are strong, and I believe you can do this. Self-harm is a really difficult issue, but it’s not impossible. I'm on this journey with you, and I believe you can do this. I love you all so much, and the thought that any of you would feel so unhappy you’d want to hurt yourself makes me just want to hug you and never let you. Stay strong you lovely, lovely beans, and hold on with me. Together, we can make self-harm a thing of our past.

Alley-Cat xxx 

© Alice Daley 2015

She

I've written little pieces about four of my friends who also have M.E. and who inspire me every day:

She speaks with her brush, her hands steady though her heart is trembling. The pain behind those quiet eyes is intense, yet what she creates is beautiful. Every day is a day on the battlefield against her body, yet she fights every day with such grace. She is a tree-fairy, a girl of the forest; she steps lightly amongst her friends. They know what it is to stand like a stone, battling the elements, shading those weaker than themselves. She is the whisper in the wind, the colour in the sky, the laughter of children. Her soul pours onto canvas after canvas as it’s such a vast sea of radiance and love. She is full of love, but also full of sickness. Each hour is fought with bravery, each paralysis terrifying, each day a victory. She is a beautiful soul, who shares the beauty within herself with many with her brush.

She is a feather, dancing in the wind, clinging to the trees, laughing with the breeze. She is a brave knight who fights her dragons every day; she is fiercely courageous yet quietly gentle. She is the sun kissed hair of children; she is paw prints in the show. Her pain is indescribable, her loss immense, her suffering tragic. Yet her life consists of making others smile, showing those dear to her that she thinks of them often. Her imagination is another realm; it is exciting and full of adventure. Her dream world sometimes leaks through to this one, in glimpses of beauty and love. She is a beautiful soul, a child of the earth and the sky, and whenever you see a feather, she is with you in spirit.

She is a mad cat lady, she’s funny and kind and sends people cards, she gives away old possessions for free and likes to wear clothes from Nomads. She’s gentle and loving, but she’s still got the spark of her punk days twinkling in her eyes. She’s adventurous and inventive; she creates beautiful crafts, and heart tugging music. She isn’t afraid to be honest about what this illness has done to her, she’s brave and funny and an amazing friend. She’s down to earth and yet has her head in the clouds; she is loved deeply and widely. She’s not bitter, but accepting, she is nurturing and comforting. She always knows when to let someone know she’s thinking of them by sending them cat stickers.

She is beautiful, she’s brave and she doesn’t know it. She has a house full of creatures that live in the lap of luxury. She’s stronger than she knows and faces this illness daily with a quiet confidence that she will last another day. Although she struggles, like we all do, she always has time to look out for others, and sends happy mail to those she keeps in her thoughts. She’s intelligent and bright, she’s spirited and kind, and she loves all people, and is accepting of all she meets. She’s a joy to know and has the most beautiful smile.

Alley-Cat xx

© Alice Daley 2015

It's only a mug

The one problem I have with my depression is when the smallest thing can trigger me into a downwards spiral of feeling rubbish. Today it was a mug. I know, a mug. Let me begin with an anecdote from my time on a psychiatric ward in Gloucester…

The hospital in Gloucester had a very active occupational therapy department where patients could cook, go to the gym, and learn arts and crafts. One day I was invited to do mug painting and thought I would go along because I had nothing else to do. I decided to make a ‘The Fault in Our Stars’ themed mug and it turned out pretty good. It very quickly became my favourite mug and I used it a lot.

A few months back a friend accidentally dropped my TFiOS mug and broke the handle, he glued it back on but I’m too scared to use it as a mug again in case it breaks. So I decided to buy a couple of new mugs from my friend who makes them. I bought an M.E. mug and an Aspie (Asperger’s Syndrome) mug. The Aspie mug had my name on it and it very quickly became my favourite mug.

Today, whilst putting the washing up away, I noticed it was ruined. Whoever washed it up last must have been a little heavy handed with it and had scratched off most of the design. It wasn’t their fault; they weren’t to know that the design would come off so easily. I’m really gutted.

But the point is that something little like that can really throw me off, it’s put me in a really low mood this evening and that’s not okay. I don’t like the fact that these little things bother me, I don’t want them to, and I’m not consciously letting them bother me, they just do.

Still, it’s only a mug at the end of the day.
Alley-Cat

© Alice Daley 2015

I don't know where to start

So a year has passed since my last blog post and oh my days so much has happened. But I'll fill you in on the basics, if I go into too much detail I'll be here until next year!

So, firstly housing:

• I moved in as a lodger with a Christian family last September. For one reason and another it didn't work out and therefore firstly my mouse, Isaac had to be adopted by my good friend, and then I had to find somewhere to live in January this year.
• So I moved in with my friend Sam, and it was going great until his landlord decided he wanted to sell our house. So by the April I was looking for somewhere to live again!
• Finally, on the 17th April 2015 I moved into my own adapted bungalow! It's in a little sheltered housing complex in a nice village with public transport access to most places I need to go, it's lovely to finally have somewhere I can call home.
  

Secondly, health:

• My health has been very up and down over the last year. 
• In January I made the very difficult decision to purchase an electric wheelchair, as I was finding using my manual wheelchair very difficult. Wilbur Wheelchair has changed my life. I am now much more independent and able to do things.
• Mentally I've been quite unstable, having been passed around between CMHTs and the Crisis Team, I have thankfully avoided another stay on a psychiatric ward. Today I have a meeting with the Crisis Team and the local CMHT for a handover, so that's a really positive step.
• In my adapted bungalow, I've had a lot of equipment to try and make day to day living possible. This includes a hospital bed, a commode, a swivel bather, a raised toilet seat, a Supa kettle (after I severely scalded myself) and some other bits and bobs. It's made things so much more manageable.
• As well as this I've been given 10 hours per week of care, and have employed my close friend Jacob as a Personal Assistant. We're pushing for more hours but it's so great to have some help with the basics.
  

Thirdly. animals:

• Now, I've already said that I had to rehome my Mouse Isaac due to issues with my landlady. Thankfully in my bungalow there are no such issues so I've been able to start a small animal sanctuary.
• I'm full to capacity at the moment with 7 rats, 10 mice, 3 hamsters and 2 outdoor bunnies.
• I will do proper introductions in a different post and I'm thinking about starting a side blog called 'Alley's Animals.'
• I'm also going to be studying a foundation degree in September, in Animal Science with Animal Health Management, so I'm really looking forward to that.

  

  Top Row Left to Right: Emily Mouse, Marley Mouse, Billie Mouse (RIP), Hazel Hamster, Ash Hamster, Ginger Hamster.
  Second Row Left to Right: Kira Mouse, Skye Mouse, Felix Mouse, Jeff Rabbit, Rupert Cat, Dixie Rabbit.
  Third Row Left to Right: Bellatrix Rat, Arwen Rat, Gabby Rat, Tess Rat, Benjy Mouse, Marius Mouse.
  Bottom row Left to Right: Peace Rat, Hope Rat, Joy Rat, Eponine Mouse, Cosette Mouse, Fantine Mouse.

So, I'm going to sign off here for now, but I'm looking forward to starting blogging more regularly again. Lots of love and Toodle Pip,
Alley-Cat xxx

© Alice Daley 2015

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