Thursday, 21 May 2015

21 things I want to do when I'm 21

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My birthday is fast approaching and I haven't even had time to think about it due to having so much going on at home and exam stress. So, I thought it'd be a good idea to create a list of 21 things I want to do when I'm 21 to help me set my goals for this year. As always, they are health dependant, but one can dream, right?

21st List

1)Celebrate my birthday - It's right before my 2 exams so I'm going to have to postpone it until later in June. My plans so far are 2 hospital appointments so it'd be nice to do something a bit different
2)Finish (and pass) my a-levels - It's taken 5 years so far, I'm on the last hurdle
3)Start singing lessons - I've wanted to do this for ages but haven't had the confidence
4)Start pottery classes - I already have this planned for a few weeks time, so just need my health to behave
5)London graduation - I LOVE London, and I love Team V, and since it's the final year I want to make sure I get to say goodbye to everyone
6)Raise £1,500 for Project Parent - This would mean I can continue the project next year on my own back
7)Expand Project Parent - I'm currently appointing 5 area leaders for this
8)Complete GNR for Project Parent - And hopefully walk some of it...
9)Go on a Spa Weekend with my boyfriend - to a posh one as well!
10)Start my crafts business off again - It's been a bit neglected
11)Save enough money to go abroad - That 5* hotel would be nice...
12)Dance teaching - I don't care how long, I just love doing it
13)Improve my health - That should have been number 1!
14)Help other people with ME - Spread my knowledge + help people
15)Finish my summerhouse - It's nearly there!
16)Visit my friends - A bit of a push, but I love my friends + travelling
17)Decide what I would like to do for the next few years - to Uni or not to Uni
18)Do the big fundraiser for MENE - We had to postpone it due to health, but if thing pick up, Brooke & I are on a mission!
19)Gain another qualification - whether its a singing grade or a dance teaching exam, I'm flexible
20)Volunteer - I have my own project running, but I'd like to volunteer for some other organisations
21)Be happier, less stressed, manage my illnesses & spend more time with my family - Stress/illness/depression/anxiety takes up too much of my energy, I'd like that to change.

Of course, if my health changes all these goals will have to change too. I based this on thinking my health would get at least a bit better. If it's a lot better, I'd love to go to Disneyland. If I continue like this / deteriorate then we'll have to plan more things from my bed. The joys of not being able to predict my health, haha!

Kate x

Monday, 11 May 2015

Day 7 - What's happening on ME Awareness Day

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Day 7 - ME Awareness Events

Edit. So, today was supposed to be my 'big' reveal of my big(and crazy!) fundraising event for 2015. Well, life just doesn't work like that sometimes. Both me and Brooke (another ME sufferer who I was doing it with) are having a bit of a tough time both physically and with exams, so we've decided to postpone our event. I reiterate postpone. We are hoping that we can complete it maybe later on in the year, or if all else fails, next year for MEAW. We hope we haven't disappointed anyone, but ironically, our health just isn't good enough at the moment.

So, I've been thinking so hard about what to do this year, and my mum quite rightly pointed out I don't have to do anything crazy, just something small as every little helps. So, I will be doing my bit by supporting others tomorrow. It's a really hard day for everyone, especially when sharing info about our health which we try to hide, and so many amazing people are putting on so many amazing events I thought it's time I take a step back and support other peoples fantastic events.

As well as participating in these 5 key events which will be happening tomorrow, I'll spend extra energy making surprise post for some sufferers to make them smile :)

Here are 5 events which are happening on ME Awareness Day (12th May) which I will be participating in, and I hope a lot of people will jump on board too. All by ME sufferers, plenty of opportunities to win, donate & raise awareness all round!

1) Meg Says (featuring Hayley) ME Awareness Video. Find it here at 11am on 12th May
I have only just recently came across the lovely Meg & Hayley via instagram. They are always posting such lovely things and I really admire their way of getting the word out. So, they've teamed together to make a youtube video about ME which no doubt will be amazing. Take a few minutes of your time to check it out. (Plus, they're gorgeous, you could do worse things with your day!)

2)Smile For ME's viral campaign.
Join in, or follow, Smile For Me's campaign to raise awareness of the condition. Alice and Gracey set up this amazing charity a few years back, and have been so helpful to me and many others. It's such a worth charity, and this simple idea is already raising so much awareness. Whether it's instagram or twitter get involved.


3) Spoonie Survival Kits 
Pippa has not only came up with this idea of creating little survival kits for ME sufferers, but she also makes them up herself. Whether you purchase one for yourself or as a gift, the money goes to charity, so why the heck not? Have a look here.

4)Blue Sunday
The whole idea of this is to have a little tea party, whether it's at home or online, to raise money for ME. It was founded by Anna who raised a lot of money last year. It takes place on the Sunday after ME Awareness day (17th May this year!) and is as easy as having a cup of tea. This is one of my favourite events, I think Katie and I are going to have a little tea party too! Have a cuppa & donate here.

5) Auction
The lovely Ali has created a facebook group (here) which support ME sufferers and gets them to 'fight like a princess'. I love this, especially since the group is called 'The Princesses and ME' since everyone loves princesses ;) She has some lovely items up for auction where the money goes to ME charities. Take part at 7pm on ME Awareness Day (12 May, remember?) and win yourself an item or two!

These are just 5 out of many events which are happening all over the country. A huge shout out to all the sufferers who are doing something, no matter how big, to raise vital awareness and funds. I salute you!

Well, that rounds up ME Awareness week. I hope these blog posts have been useful (big whoop to me for reaching nearly 3,000 views!) and I hope everyone manages to celebrate the day. 

Kate x 




Saturday, 9 May 2015

Day 6 - A Day In The Life Of ME

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Day 6 - A Day In The Life of ME

Here, I want to show you a typical day I have. These vary a lot so I've put it into 3 categories; a 'normal' day, a 'good day' and a bad day. 

Normal day:

I wake up everyday (bar my particularly bad days) at 10am as this is what my OT has advised me to do since I was sleeping all the time. It takes me about half an hour before I can sit up due to dizziness & weakness. My sister will come upstairs with my breakfast (gluten and dairy free porridge) and I'll stay in bed. At about 12 I will get up from bed, put some clothes on, and make my way downstairs onto my recliner chair. I'll lay in my chair until 1.30 when my carer comes. My carer will make my lunch and have a chat, which breaks my day up nicely. I'll usually do half an hours activity, like have a look on my laptop, and go upstairs for 2.30. I then sleep 2.30-4pm (which is really good for me, after sleeping so much during my relapse). When I wake up, I'll lay in bed for a bit & do some easy jobs (like writing letters or work) and come downstairs when tea is ready. After tea I lay in my recliner, or on my sofa bed, and watch an hour or so's TV. I will then do half an hours work. I'll spend time with my family downstairs until about 9.30 when I'll go up to bed. I'll usually write in my diary, do some drawing and text a bit before going to sleep at 11pm. And that's it really! Things which differ to this routine is I usually have at least 2 hospital appointment per week which I have to attend, and I go out with my carer on a Wednesday, so I have regular small outings for medical purposes. I also teach for half an hour once a week which is my only 'normal' activity I do which isn't for medical purposes.

Good day:

Things will be added onto my normal routine if I have a 'good' day. This would usually be going to meet a friend for an hour or going out shopping. It's really important getting out & socialising to help both my mood and anxiety. 'Good' days usually mean I am out of bed more, talking more and generally feeling a bit more alive.

Bad days:

This is the easiest one to write. My 'bad' days usually consist of sleeping around 20h through the day, and when I'm awake I lie in darkness with my earplugs in and have a small meal. Thankfully, these really bad days only happen about once a month. I have about 2/3 'bad' days where I cannot do my normal routine but my really bad days are less regular.

The thing with this illness is that it varies so much. I've learnt to pace myself so I don't have as many bad days, but if you have a relapse or blip your whole routine can change in an instant.

Kate x

Friday, 8 May 2015

Day 5 - The Spoon Theory

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Day 5 - The Spoon Theory

The idea behind it is that your energy represents a certain number of spoons. So say, for example, I had 15 spoons a day. This is my energy limit and I cannot go over this. Then, with these spoons, I can do a number of tasks in exchange for the spoons. For example, getting dressed might take 2 spoons but meeting a friend may take 6 spoons. Once you work out how easy it is to use your energy, and spend your spoons, you'll be amazed at how quickly they go. For me, my 'spoons' are spent on everything from talking to friends/family to going out for hospital appointments. It's very easy to spend your spoons. Some days, you have less spoons because of a relapse or blip. Occasionally, you can spend some of the next days spoons but this will have very negative affects and can easily cause a relapse.


Find out more about it here

Kate x

Thursday, 7 May 2015

Day 4 - Achievements / Lessons

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Day 4 - Things I have achieved a lessons I have learnt.

Since both of these categories could go on forever, since it's day 4, I've chosen my top 4 achievements and 4 most valued lessons learnt.

Top 4 Achievements
Here, I wanted to list the best achievements I've had since having ME. Since I got ill with ME back in 2008, I thought I'd better keep the list short ;)

1) Volunteering

I cannot fathom enough how much volunteering has changed my life. I became a leader for Vinspired and then made it onto their mentoring scheme. I continue to volunteer as often as I can and think its a very rewarding process. I thoroughly encourage people to volunteer. You can even do it, like I did, from my bed and at hours to suit you. Make a difference today!I have completed 1720h of credited volunteering which is a huge achievement for me. 

2) Awareness Raising

Whether I'm zip wiring off the Tyne Bridge, skydiving, doing the GNR or doing bake sales, I've raised a lot of awareness (and money!) for ME charities in-particular.I've raised £1635 just online so combined with the amount raised off line this will be a decent amount. One of my proudest moments was  doing an interview on ITV, you can find it here. I also did another interview about online learning which became a top hit on the guardian website. My ME Awareness Week challenge for this year will be revealed on Sunday, so keep an eye out!

3) Getting my dance teaching qualification

This will still be one of my proudest moments to date, and one I worked my hardest on. I had to go from being virtually bedbound to being able to do a 1.5h dance exam on teaching. I got a job teaching, I got a distinction in my exam and I had the strength to start a little bit of physical activity. Unfortunately, it didn't last very long, but I'm still managing to teach for 30mins a week.

4) Setting up my own community organisation

This is my most recent achievement, and after receiving a grant of £2,000, Project Parent is on the move. It's crazy to think about how one little idea turned into such a big thing. Huge credit to Alex who helped me pursue this!

Top 4 lessons I've learnt

4 lessons which I have learnt from having an illness

1) Who are your true friends

This is a major one for me. Being stuck in the house a lot you realise who will call. A bit of freedom will reveal jealousies. It doesn't matter how big your circle of friends are, just as long as they are there for you through thick and thin. Special shout-outs go to... My family, Andrew, Alex, Victoria, Cat, Becca S, Becca F, Brooke, Katie, Hannah, Jen & new lovely people like Jasmine :) You guys are amazing. There are a lot more out there who are good to me too, you rock!

2) Enjoy the little things

Whether its being able to enjoy fresh air for the first time in months or seeing a friend, there is so much to be grateful for.

3) Acceptance and hope

These are two words which don't usually go together, but need to with anyone who suffers from a chronic illness. I learnt I had to accept my limitations, accept I was poorly and accept that I am most likely to have this illness for a long time. But that doesn't mean you give up hope. I know that I need to hold on to something, even if it's just little, in the hope of getting better or improving. A positive, but realistic, mind frame is key.

4) Work with what you've got

This is linked to acceptance, but it's learning to know what is laid out in front of you on the table and knowing how to use it. Yes, I don't think I'll manage to put on all my make-up to look glamorous for going out today, but maybe I can use my highly attractive decorated crutch ;) It's about knowing what you've got and how to work it. I still model occasionally despite being disabled, you just have to adapt to the situations. 

Hope this is helpful, can't wait til Sunday to reveal my ME Awareness Week challenge!

Kate x

Wednesday, 6 May 2015

Day 3 - Dealing with ME

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Day 3 - Dealing with ME. A list of aids, adaptations, medication and treatments.

We are up to day 3 now, and this is probably going to be quite a long post, but I'll try keep it simple. I'm going to list the things that I have/need to help me with my ME symptoms.

Aids:
*Wheelchair
*Electric scooter
*Crutches
*Walking stick
*Perching stool
*Extra handrails on stairs
*Bath-lift
*Bedlift
*Insoles
*Rails outside
*Sofa bed
*Pillows for certain problems (legs, neck..ect)
*Splints for both wrists
*Kinesiology tape
*Occasional heart/blood pressure monitor



Adaptations:
*Downstairs bathroom with toilet and wetroom




Medication:
Without going into detail of exact meds and dosage for some items...
* Antidepressants
*Anti-anxiety medication
*Anti-nausea medication
*Pain medication - gabapentin and tramadol
*Digestive medication - Omeprazole, mebevarine + others for deodenitis 
*Sleep medication - melatonin
*Asthma - steroids and inhalers
*Vasovagal syncope - steriod tablets
*Vitamins & minerals - Vitamin D tablets, Iron, Magnesium spray and salts
*Migraines - migraleve & paracetamol 
*Extra - nose spray to help with breathing issues, throat spray for recurrent infections, heat pad, cool pad, eye masks, ear plugs, remote controlled dark light...


 (Not even a weeks worth of tablets)

Treatment:
There is no cure for ME. I do these treatments to help stabilise my condition and help make small improvements.
*Alternative therepy - Accupuncture and cupping. This is done weekly without fail and I've had it for the past 2/3 years. If I miss one week I become bedbound, so it's been a lifesaver for me, although it hasn't cured the problem
*Physio rehab and occupational therapy treatment
*Pacing



I could show you photos for all of these things, but that would a) take up a lot of room and b) be quite boring as you've seen most of these things before. Instead, I leave you with a slight snapshot into my life. I'm in hospital a lot and try my best not to complain about it. Here are some hospital related photos from a&e and other incidents.












Kate x

Tuesday, 5 May 2015

Day 2 - Symptoms

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Day 2 - Symptoms

I'm trying to work out where to start with this one, there is so much to cover. So, I've decided I'd make a list of symptoms I suffer with due to my ME or illnesses relating to my ME.

Just to reiterate, these are the symptoms I suffer from on a daily basis. Everyone is different and will have more/less than I do. So this is just an insight.

Neurological symptoms:

* Temperature dysregulation and poor tolerance for hot or cold environments. I'm always cold. And occasionally stupidly hot. No middle man!
* Hyperacusis (sensitivity to noise) and photophobia (pain/relapse on exposure to light). I'm sensitive to noise generally, so struggle at loud environments like restaurants. On my bad days, I have my earplugs in all the time as even talking downstairs makes my ME worse. I'm also extremely sensitive to light. You'll see me modelling my sunglasses both indoors and outdoors. On a bad day, I'l be in total darkness and even a dim red light (I have special lights for my sensitivities) will hurt my eyes.
* Pain and pressure behind the eyes
Blurred vision, blacked-out vision, yellow patches and other visual disturbances. This seems to be linked to my migraines, but I've lost all my sight on numerous occasions. Nowadays, I tend to just get blurred vision and yellow lines going through my vision, unless I'm really poorly.
* Difficulty initiating sleep

Plus many others (which I've probably forgotten about)

Vascular and cardiovascular signs and symptoms:

* Heart pain, tachycardia, bradycardia and a fluttering/straining heart. Regularly think I'm dying/having a heart attack. I do have a heart condition though, linked to my EDS, which can exasperate symptoms.
* Very low blood pressure particularly when upright (e.g. 84/48 or less in an adult at rest). I have Vasovagal Syncope, linked to my ME, which means my blood pressure dips dramatically without warning. This causes dizziness, heart fluctuations & black-outs 
* Feet burning painfully and turning blue/purple on standing (Reynaud's phenomenon). I always have purple feet. It isn't attractive. My legs do this also...
* Pain/discomfort/poor digestion following meals. This barely describes it. I've had internal bleeding and have a variety of problems linked to my digestion. Because of this I've got to be very careful what I eat or else my symptoms will flare up dramatically.


Muscular signs and symptoms:

Muscle weakness, numbeness and paralysis (affecting all muscles including the heart, eyes, digestive system etc.)I've had paralysis in both arms and part of my leg before but thankfully I don't experience this on a daily basis anymore. Weakness wise, I'm very weak in most of my muscles, which makes day to day things much harder, and, means I have to work very hard with physio to avoid further deterioration.
* Muscle pain, twitching and uncontrollable spasms. Can't even describe the pain, it makes you feel sick. Thank god for good painkillers. I'm often in a&e with uncontrollable pain. Muscle spasm wise, I 'jolt' when I'm very poorly, but generally usually just get smaller twitches.
* Difficulty breathing and air-hunger, difficulty swallowing/chewing. I feel like I can't get enough oxygen sometimes and ofter struggle chewing and swallowing due to my throat symptoms.
* Daily disclocations/sublaxes. This is mainly due to my EDS but also becuase of my muscle wastage due to ME. I'll have around 3 dislocations on a normal day, which can triple easily on a worser day. My shoulder is the worst. 

Cognitive signs and symptoms:

Word-finding difficulty, difficulty or an inability to speak. I suffer with severe 'brainfog' and when I'm poorly it's very hard for me to hold a conversation or make any decisions. When I'm really bad I struggle to talk too.
Difficulty comprehending speech
Difficulty writing or comprehending text
* Difficulty with concentration
Difficulty with memory

Other signs and symptoms:

* Anxiety and depression. This is one of my worst symptoms to cope with.
Nausea and vomiting. Nausea can be a major issue for me, and when I get very stressed or anxious I struggle with sickness
* Throat and gland pain/tenderness
Food intolerance and sensitivity to common drugs/chemicals. Goodbye Herbal Essences Shampoo.
* Recurrent infections


All these symptoms I have fluctuate on a daily basis, but are always present. This is just a snapshot of symptoms that people with ME may suffer with. The severest cases have daily seizures, organ failure and some have died with the cause being ME. So it can get very serious, but thankfully I've never been at that level. I'm sure there's plenty of symptoms I've forgotten too, but I'm hoping this helps!

Kate x

Monday, 4 May 2015

Day 1 - My Story

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Day 1 - My Story

Edit: This was a shortened (thank god) version of when & how I got ME, but it ended up being a little longer. Firstly, I'd like to tell you what ME is. ME is a multi-system disease, affecting not only the neurological system, but also the immune, musculoskeletal, endocrine and cardiovascular system. It has many different symptoms (some of which will be covered in tomorrows post...) and a range of severities. 

So, to make this as interesting as possible I've produced a little timeline of my life and marked key events relating to my ME so you can see the pattern which has formed.


Timeline

1994 - I was born. A happy healthy baby. From then on I developed well as a child, enjoying school, dancing at weekends and barely ever getting ill with anything.


2002 - I became ill with what we think was a virus, and had to take 7 weeks off school to recover. Also, I just started to train to become a professional dancer. I was put on pointe aged 8 and worked myself hard. At my peak when I was training I would wake up at 5am and do an hour/hour and a half ballet practise before school. I would get home and do another hours practise, or do a 2h private lesson. Then, on Saturdays, I would help train younger dancers and have 2 private lessons, resulting in 7h constant training. I was also very active at this point, being a cross country runner, playing football and doing extra athletics. I was always on the go. But, I started to dip in the winter time and had to take a few weeks off dancing. But I soon picked up again.


November 2008 - Until now things were going fine. I was in high school, still dancing (but deciding not to train professionally) and managing ok. I went to my friends party one night in November and I started feeling really sick so went home. From then on, all my symptoms went downhill and never came back up again. 

2008 continued... It started with anxiety, I was having 4 hour panic attacks at least once a day, which exhausted me. I was too tired to attend school, my attendance dropped and got to the point where they said they would take mum to court if I didn't go in. I started getting tired. Not the usual tired. The tired where your body feels like lead and you're adamant you're about to die. I started crawling up the stairs. I couldn't eat. I stopped everything. I lay in my room day on day doing nothing but thinking I was going to die. And the horrible thing was, I didn't care. At least I wouldn't feel this horrible, be in pain, anxious to a horrible level, depressed and not knowing what was wrong. I eventually got referred to the hospital who immediately went down the depression route (which is pretty common in ME). Yes, I had terrible depression and crippling anxiety, but that was because I had no idea what was happening to me or how to fix it. Also, they refused to listen to me until my weight was at a reasonable level, putting it down to an eating disorder, which infact was anxiety and my ME combined.

*No pictures as I was in a bad state and didn't know taking pictures at this point would have been good for ME awarness raising...*

November 2009 - After a year of counselling and investigations, I was diagnosed with ME. I kind of knew I already had it, as 2 others in my year group had just been diagnosed, but it still was a hard hit. We got given a leaflet, and said she'd see me in 6 months. That was it. There was no help available bar a local service (which were a godsend!), no-one knew how to treat it and no cure. At this point my weight had hit a critical level too. I became very poorly but no-one knew what to do with me. I don't have any photos from when I was at my lowest, both weight wise and health wise, but this one was taken just before I took another dip. Note: I started using a wheelchair almost as soon as my diagnosis as I couldn't walk far.


April 2011 - Up until now things had been quite stable. I needed my wheelchair a lot, my weight was low, my panic attacks were bad, but I could still get out and enjoy doing little things. Up until April where I experienced my first episode of paralysis. Both my arms went into paralysis and I didn't get the feeling back in one of them for a week. This left me in a terrible state. Now, I was reliant on my family to wash me, brush my teeth, dress me, and prop me up.

*No pictures, as I was too poorly to be holding a camera or being photographed*

2013 - Things had been relatively stable, the usual boom and busts. I then developed a lot of complications from ME. I was blue lighted to hospital numerous times and was a regular visitor in a&e. I suffered with internal bleeding which the cause was never fully found, as I'm still getting investigations. Because of this I got a lot of secondary illness' like deuodenitis, a hiatus hernia, gastritis and IBS. The problems with my digestive system continued to deteriorate.



2014 - Start of the year I got diagnosed with EDS. Easter time was just amazing. I'd finally started to pick up, but I went a bit crazy. I couldn't walk far, but it improved, and I still needed my wheelchair a lot. I couldn't go out every day or attend college regularly. But I felt alive. I felt like there was hope and I was recovering. At my best I was doing my dance teaching qualification and teaching for 3 hours a week. I went to visit my friends and I started to live a semi-independant life.


September 2014 - 'ALL GOOD THINGS COME TO AN END'. Correct in this case, my lovely time feeling stable stopped. I had to give up my major dance teaching which literally broke my heart. I then had to give up college. And the list continues, I missed out on holidays, seeing friends, days out... I dipped the most at about March 2015. I was sleeping 20h+ a day, 7 days a week. I couldn't eat, struggled to even sit up and spent a lot of my time in darkness.



Now - Good on you if you've got this far reading it. My relapse is stabilising. I can do 1h activity most days. I'm still in my wheelchair, but I am a lot better at pacing myself out. I'm missing out on a lot of things, and have to be very careful with what I do now, but there is a little glimpse of light as I thought I was going back to square 1. 

Here are two pictures, taken recently. What you see depends on what kind of day I'm having. And even though sometime I look well, I might not be so good when you see me in person!



This is just a little glimpse, surprisingly. I had a lot of bad points and a few good points inbetween. I haven't gone into much detail, but this is a rough timeline of how my ME has been from my diagnosis to 6 and a half years later.

I need a lie down. Kate x



7 days of ME

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This week is ME Awareness Week, and I always do something to raise awareness of my condition(s) around this time of year. This year, I'll be doing something a bit different. Throughout the week I'll be doing a blog post a day on things relating to ME, making it 7 days of ME. 

As many of you know, I always do a big fundraising activity for MEAW (ME Awareness Week). I'll be revealing what I'm doing this year at the end of the week, so keep your eyes peeled. Last 2 years were zip wiring across the river Tyne & doing an indoor skydive... Could we beat that?

Here's my plan for 7 days of ME. I'll be tagging it with #7daysofME for anyone who wants to follow on my instagram or twitter.

Monday - My Story. A timeline showing you what I did before ME up to how I am now. Oh, and a quick rundown of what ME is.
Tuesday - Symptoms list. A list of the symptoms I suffer with related to my ME
Wednesday - Dealing with ME. A list of aids, adaptations, medication & treatments which I have to lessen the symptoms of my ME.
Thursday - Achievements & lessons. What I have achieved despite having ME & lessons I have learnt.
Friday - The spoon theory. A theory we all refer to when trying to explain how much energy we have left.
Saturday - A day in the life of ME. A days insight into what I do and how I conserve my energy. (Can't promise it will be very interesting...)
Sunday - Reveal of my 2015 MEAW fundraiser.

Hope this will bring some awareness, looking forward to the week ahead. Kate x