Sunday, 28 December 2014

Health doesn't equal happiness

The highs and lows of 2014

  • Meeting a poorly pal.

Slanket capes and joint Purple Time! 

It was just the best! To have been chatting online and texting someone for so long and then finally there they are stood on your doorstep! And they understand absolutely!

It broke my heart a bit. To see her suffering and struggling. And knowing how it feels to feel like that. It was the strangest feeling. I said the things that I'd promised myself I never would - because I myself cannot answer them. Things like 'How are you?' 'Do you think it's making a difference?' 'I hope you're okay' And I don't know why I asked because of course she's not okay! She has severe M.E. I hoped so much that I didn't wear her out. But of course I must have! Just being out of her house and in mine would have done that. And it wasn't just a five minute journey she had to contend with. 

So now I know how you must feel - or at least how you felt in The Beginning. When you first met the new, poorly me. This is how you must feel when you see me or think of me and my health. Desolate. Unable to really help. 

But I can only do my best for her - offer her my friendship and my time and energy. And that's all I want from you - a weekly text message or a daily joke or a card in the post. That's all any of us can really do for our poorly pals. 

  • JustGiving Award nomination
  • Blue Sunday 
  • Old and new friendships in general - I was reunited with an old school friend this year and it felt like no time had passed whatsoever!
  • Countless lovely messages, tweets, and comments about my blog and my awareness efforts
  • Family

Practically-older bro, Not-so-big sis, me, and Not-so-little bro

  • Having the physical strength to allow my hair to grow and being able to wash and brush it myself

My locks are now so long and luscious that I can pin them up again!
  • Seeing things through their eyes - a couple of my old housemates noticed little things that I had missed. I didn't need to put my feet up on a chair while sitting in a coffee shop like I'd had to before! And I'm apparently much more expressive with my hands when I'm talking! My hands rarely lie limb in a claw-like position on my lap.
  • The online community - the ultimate high!

  • Allan 

We lost Our Allan suddenly and unexpectedly in August, just shy of his 60th birthday. I'm sure he would LOVE that we keep using his Princess photos when we talk about him!

  • Dining Room Days - life is full of surprises but I wasn't expecting this one so 'far' into my recovery journey. Curse those stairs!

So here's to a happy 2015 for us all. We may not get a healthy one but here's hoping it turns out to be at least a tiny bit healthier than this one.

Saturday, 13 December 2014

Foreign Territory

I feel like I'm doing a kind of social experiment now!

So I've been on an online dating site for a week now. 

If someone messages with 'Hi, how are you?' I'm not massively impressed. Whereas if it's clear from someone's message that they've read my profile I will always reply. I've been asked on five dates. I'm not keen on meeting a couple of them because they haven't made any effort to get me first and I don't have energy to waste here people. I've told one I can't possibly meet before Christmas. He says he'd like to wait. He thinks it's because Christmas is busy because of our family business. It's half true!

Out of the five men who've asked me out (how hilarious is that?!) I've only told two of them that I have Myalgic Encephalomyelitis. (I haven't uttered those two letter M and E on purpose.) One man dissected the words to work out what they meant. I mentioned mitochondrial failure and he instantly knew I must have a depleted energy supply. He's asked a few questions but it doesn't feel like an issue. Yet. He doesn't ask if I'm tired, rather if my energy levels are okay. Should we clone him???

So how am I finding it?

A bit scary and overwhelming. But enjoyable. I think it's important to be out of your comfort zone once in a while. But only if your health can cope!

Even just messaging is wearing me out but I'm quite excited. The adrenaline realised however is proving problematic. Adrenaline is exhausting. It's going to be my biggest challenge I think. It's a big reason why I've avoided this whole thing! I think I suffer from adrenal fatigue...

Adrenaline can feel toxic and like poison. I can actually feel the nerves in my arms, for example, prickling as its released. It's a bizarre feeling - to feel like you can feel the adrenaline rushing around your body.  Excitement triggers it. Nerves trigger it. God help me if/when the day of my first date comes around.

Raining on my parade

So there's a nice man who I've agreed to a date with. (It all seems very fast!) And just like that the excitement was gone. Trying to find a date and time around his work and my need for days of rest inbetween plans...sorting it out just wasn't fun anymore. I've been quite honest with him. You almost have to do the commitment chat before you've even met! "Look I know my health might seem full on so I completely understand if you'd rather nothing came of this..." 

I think, to date me, would be a huge compromise for many people. There is so much I cannot yet do. Day trips to London. I can't go for long walks. I can't go for any kind of walk without payback and pain. Sleepovers... 

Many people will think this is a hare-brained scheme. That I'm too poorly to date. That my energy supply rarely allows me to spend time with my friends never mind trying to juggle a new person in my life.   

And I'm laying here wondering if they're right. What on earth am I doing?! If nothing else, I'm testing the water.

I'll keep you up to date. 

Sunday, 7 December 2014

Paul Tomkins - We are death, warmed up

I'll admit it has taken me a few weeks to read and digest this piece of writing by fellow sufferer Paul Tomkins. You may have heard of him from football columnist fame. Now that I've taken it all in I wanted to share it with you incase you'd missed it. It is an incredible piece of writing. Here are a few extracts. 

Paul Tomkins - We are death, warmed up

"We’re not lacking energy and motivation because we’re depressed; we’re depressed because even the basics can be a drain. Our condition doesn’t go away when we are happy, or on those occasions when we’re able to have fun. And yet obviously anything in life seems a little easier if it’s enjoyable. Adrenaline will get us through on certain occasions, but the bigger the rush the worse we feel afterwards."

"If you – the healthy reader – do nothing but lie in bed for a month you will feel like we do, grow weak like us. Just look at the astronauts returning from months on the international space station, and how they’re too weak to walk. They have to be carried from the return module like newborn babies. But if, like them, you try to get better, you will. We won’t. We know, because we’ve tried."

"At times it’s easy to forget that ‘normal’ people feel tired too, although, of course, they often like to remind you. The key is the word chronic in Chronic Fatigue Syndrome (although we don’t like that name as the illness is not just about tiredness). No one says to someone with arthritis, “Yeah, but I also get aches and pains.” Everybody gets aches and pains. That doesn’t mean they have a chronic condition. Everybody gets headaches, but that doesn’t mean they have something seriously wrong. No one says “I get headaches too” to someone with a brain tumour. People with M.E. get tired, and get headaches, and have a lot of pain, and their experience of them is frequent and ongoing."

"How do you imagine a pain greater than you’ve ever experienced, or a torment wilder than your own mind has endured? I’m not sure that you can."

To read the full article click here.

Thursday, 4 December 2014

Are we the real Undateables?

This post is MUCH longer than I usually like to post. It may well come across as pessimistic. I'd prefer to think that it's realistic. I don't need to be told that there are lovely, caring, understanding people out there. I'm not an idiot. Dating can be eventful with or without health factors. These are just my thoughts as of now. I mean no offence. I'm talking from my point of view only. 

Are we the real undateables? 

We can't even always tolerate being in the same room as another person because it is over stimulating!!! Never mind get out on a date or even have someone come for dinner. 

A long time ago a friend of mine asked me to blog about dating with a chronic illness. I haven't tackled it before because I've actually only been on one date since being ill and I felt so ill I can't/don't really want to remember it. 

I'm being super brave and sharing this because I know there's so many of you in the same boat. I'm not usually one for sharing details of my love life (ask my friends) but I'm going to share a few posts with you. Starting with this one. 

I think I'm alright. I have plenty to offer someone I'm sure. I don't think I'm a hideous person inside or out. So there's no need to think I'm down on myself and wallowing. I'm not. I'm just honest.

Online dating doesn't have the stigma attached to it that it once did. I'd still much rather meet someone the old fashioned way. But I rarely go out so we have a bit of a problem there. I've dabbled with Tinder. I joined out of boredom and not in seriousness. If you need a chuckle you really should join. It's a dating app. Apparently. It finds you all of your local singles and you decide whether you like the look of them or not by swiping left or right accordingly. If someone has 'liked' you and you've liked them you get a 'match' and can then message each other. Or not. I did a tiny inward dance every time I got a match just because it felt good to think someone still thought my recent photos were likeable.
It's terribly shallow and goes against my mantra of not judging a book by its cover. But it can be hilarious!!! One man had bright pink hair. Many others have photos of them on their wedding day. On a dating site! Wow she bagged herself a winner there huh. But the worst ones don't show you pictures of their faces...get my drift? Classy.

So during an insomnia fuelled ipad session recently I joined Plenty of Fish. I'm just browsing you see. There are so many single men out there. Who knew?! Not me. I've hardly been out of the house these past few years. But I've found that more than a few are only after one thing. 

Cue cringeworthy messages with grammatical errors and spelling mistakes. 

I've been half honest and uploaded a recent photo (with make up!) and written in my 'About Me' section that "life hasn't quite gone to plan since graduating." I've had some nice comments about that bit actually. It kind of warmed my heart but there's nice people out there, even if they don't know the extent of what I'm hinting at. I've said I need a date for a wedding next year which is also half true. It's my cover! I'm too chicken to even pretend that I'm actively looking for a relationship.

I've had quite a lot messages. Some nice, some normal, some not! Many of them ask "How are you?" Or "How was your day?" And I'm like waaaaah!!! How much do I say?! How do I answer that?! So I opt for "not too bad" and hope it don't come across as too downbeat, or tell them I've had a good day because, well, for me I have. I'm showered and dressed for goodness sake! Woohoo!!!

I tell people I love sport and they say I must be fit. I change the subject. They ask what I do for fun and I'm not really sure what the answer is. What do I do for fun? Fun? What is fun anyway? I find it fun to be able to cook myself a tray of oven chips and fish fingers. 

People ask if I like to travel. Hahahaha. Oh deary me. Life with a chronic illness seems so far removed from the rest of society. It doesn't go down too well that I still live with my parents.

I skirt over employment questions. I've said in my 'About Me' bit that I'm currently unemployed to avoid having to answer the same question over and over. I've said I'm working on few projects at the moment. Meaning learning to sew and hoping to sell some of my makes, finding low energy hobbies, working on recovery. I don't say I'm a blogger because they might ask for a link and I don't want to jump in at the deep end.

Yes there will be people out there who look past and even embrace my illness. But very few will understand that I might not always be able to reply to a text message let alone meet for dinner next Wednesday night for example. Urgh. 

Some of the people I've met online have dug their own grave (so to speak) by calling me babe or hun or sweetie or suchlike. Urgh. Don't do that. You don't even know me. My name is Anna. Use it. Fool. (Edit - someone else just called me chick!)

My energy levels dip in the afternoon so while it might say I'm online I'm not able to reply to any messages coherently. This could easily be misinterpreted. Being honest might solve the problem but why should I have to share so much about myself so early on? 

I gave my number to a couple of men and immediately just wanted to throw my phone off a cliff or something. I'm so out of practice! I have been single for even longer than I have been ill (poor me!) Maybe I've become too set in my ways. 

A couple of others have asked to meet up. I immediately panicked. How do I explain that I can't possibly go on a date until February because of Christmas and payback and fortnightly plans? What will they think? 

Now my M.E. is still quite severe so I couldn't manage a walk or a trip to the cinema or an early evening meal that turns into a great night out. It's frustrating! How does one explain that all they can manage is a twenty minute coffee somewhere quiet?

 I couldn't manage to drive myself at the moment so it'd be "Uh mum I have a date. Yes I know it might not be the best idea while I'm ill but could you drop me in town and wait in the car incase I come over all funny/he's actually a massive weirdo?" I'm 26. I want to be able to take myself to such things and not feel like my 15 year old self on my first ever date at the ice rink. (That was kind of fun!) 

What would we talk about? Normal things I know but the majority of my answers would end in "but I couldn't manage that because..." or "I don't watch that because the suspense messes with my heart rate" etcetera etcetera. Gosh I would seem so boring! Even being upbeat about it, it'd become a drag quite quickly. 

Beggars can't be choosers but I'm not prepared to settle just because someone will 'put up with' my health issues. I deserve a proper lovely gentleman who'll take the highs with the lows and likes me anyway. I want to be liked for being me. Sadly though my health has an impact on my personality INSERT LINK TO PREVIOUS. I've got to get my head around that before I expect/let someone else to have a go. I believe it's hard to look past the illness when it is this severe. 

I told a friend of mine a while ago that I need a carer more than I need a partner. He recently said it back to me and it made me sad. He deserves more! He deserves romantic happiness. 

Are we really in a hopeless situation? 

Maybe we should just date each other. When one of us was well enough to go out the other wouldn't be! We wouldn't be strong enough to push each other in our wheelchairs! Oh but we'd understand what the other was feeling. Who's in?! Should we hold a raffle or work this out on a first come first served basis? 

I find it incredibly brave to enter into a new relationship while you're chronically ill. I'm not sure I'm brave enough. Would you like to share your story? Get in touch if you would. It can be published anonymously. 

Monday, 1 December 2014

Don't use the T word

I haven't used the word tired to describe how I'm feeling for several years now. I quickly realised that what I was feeling was not tiredness at all. Tiredness, as I had known it for twenty years, was something that everyone felt and was something that could be improved or made to disappear by sleeping. 

Tired is a ridiculous word, used to describe a multitude of things. It's a bit like 'nice' and 'fine' in a way. 

What I feel is not tiredness. I don't feel the need to sleep. Infact I often struggle to get to sleep. 

What I feel is exhaustion. What I feel is fatigue - to be so lacking in energy that you feel physically sick. Your muscles ache so much that it is painful. You have so little energy that you can barely move your limbs. And sometimes you actually can't - you experience temporary paralysis. That isn't tiredness now is it? You might moan after a long day at work that you're so tired you can barely move; that you're too tired to go upstairs to bed. But you do it don't you? You do move and you do go up to bed. Because you can. 

So you won't find me using the T word very often, if at all. I'll tell you I'm worn out instead. (If I tell you that  it actually means that I feel so exhausted I can't believe my heart is still managing to beat. Just so you know.) 

There are other words you won't find my using. Should is another one but I'll come onto that later. I'm too cream crackered to carry on today.