Wednesday, 30 December 2015

Away Days

I'm hoping everyone is surviving the Christmas season as best as possible. Sounds a bit doom and gloom doesn't it? To use the term surviving. Alas, Christmas can bit tricky for those with chronic illnesses no matter how organised they are or how much they plan, pace and prioritise. 

I am keeping my head above water. Just. It has been such a lovely Christmas. As always, I'd have liked to do more and see more people but Wonder Woman I am not. 

And now I must take some Away Days to allow my poorly little body to recouperate and, in the words of a poorly pal, replenish its supplies. During the blog's silence I will be attempting my first foreign holiday during The M.E. Years, which is no small feat in itself never mind so close to Christmas.

M.E. myself and I will be back in February and I hope you'll join me then for another year plodding along in the slow 
lane. Thank you to each and every person who has followed my story and walked/shuffled with me through 2015. It is an incredible feeling to know that I am not alone. Thank you for that. And thank you for using your time and energy to read about my life in the slow lane. 

And here's hoping that if 2016 can't be healthy, that it'll be happy. 

Sunday, 27 December 2015

Tuesday, 15 December 2015

The Dating Game - One Year On

I am writing this in bed. A place that is both my prison and my haven. As I lie here doing very little Mr Tree Surgeon is busy doing the washing up, hoovering, cleaning out the Guinea pigs, cooking me lunch. These are all the things that my mum does for me but because Mr Tree Surgeon is still sort of 'new' it feels dreadful to be so unable to help. When will he be bored of having to do so much? 

It has now been a whole year since I started my little dating experiment/adventure. (You can read the original post by clicking here.) I think it's safe to say it didn't go as we'd expected. A year on and the man I met on that first date is now referred to as Mr Tree Surgeon. He knows no other Anna than this one. This poorly one. And yet he has stayed. I can't tell you how much that has restored my faith in myself, even if it does feel a little baffling at times. 

This past year has seen me step well out of my comfort zone. 

When we started dating I was poorlier than I am now. Our date nights often saw me unable to speak or move for minutes at a time. Smiling and laughing required energy that I rarely had. Even now there are many, many days like this. You don't recover from M.E. in a year! Not in my opinion anyway. 

Being in a relationship has been hard at times (but not because of who I'm in a relationship with. I cannot stress that enough.) Essentially there is now an extra person who I want to be well for. And I already had so many. Plus an 'ever-helpful' old GP pointed out that if I didn't want to get better for myself then I should do it for those around me. "So that they can get their lives back." That was the last time I visited that particular Doctor...

I worry about Mr Tree Surgeon getting bored. On a day where I'd hoped to do x y and z I often find myself stuck in bed and it's likely I won't even manage a shower, never mind a hair wash and leg shave. I want so much to be able to give more than this! But he says I am more than enough just as I am. Still... Why would you date someone who is so restricted by their health? I'm honestly not sure I could now that I know how bad it can get. But maybe that says more about me and how I've been broken enough by chronic illness to sometimes forget that I am still just a person worthy of happiness and love. Like each chronic illness sufferer is. 

While I have Purple Time he reads or just sits with me. And my fears about that being too stimulating for my poorly brain have been unfounded. Because it's him. And he understands on a level that only my Wonderful Mum has done. He is completely unfazed! I think it's a blessing that he didn't know me when I was healthy and active. The wheelchair poses no problems. We mould things to fit us and my health. 

Sleep can be a problem. I get up a lot in the night to go to the loo which is something that's happened since brewing ill. It is exhausting for me but also disturbs him and so he suffers at work the next day. Sleep disturbances are incredibly common in M.E. sufferers but if I'm hit by insomnia, I can't watch TV in bed like I have done. 

I'm just disappointed that I can't do more. Yet. I go through periods of putting a lot of pressure on myself. More so with Mr Tree Surgeon, because unlike my family, he has the option to leave! And I don't want him to. I don't want to always be in my pyjamas with no make-up on and unbrushed hair! But those of you with chronic illnesses will know that getting dressed is often the stuff of dreams. I want to feel attractive not just for him, but for myself. And I so often can't. 

The same can be said of washing or showering, such simple everyday things that have almost become treats or chores, depending on the level of poorliness that day/week. I fight feelings of uselessness when I am unable to do anything to help around the house. I worry that he will get bored of me having to say no to going out for lunch, or watching something on TV because concentrating requires more energy that I have or can allow. 

Sometimes these feelings last a minute or two, sometimes longer. They're exhausting in themselves! And while they're only natural, they're not necessary. I fight feelings of uselessness often. That alone is exhausting. I am reassured that I give him everything he needs yet it is not nearly as much as I want to give. 

Alas, we are a team. Despite the worries that swim around my head I have never been made to feel like a burden or a nuisance or an inconvenience. My health is not an issue to him. He has accepted it and he has accepted and chosen me warts and all. I am just still learning that it's okay not to be as able as I'd like to be. 

It has done wonders for me to be seen as Anna, and not Anna with M.E. I will forever be grateful to him for so much, but particularly for teaching me that I'm still a whole person and not the broken and fragmented one that I thought losing my health had made me.

Related posts: 
An Open Letter
Are we the real Undateables?
Dear Diary, I'm going on a date!

Friday, 20 November 2015

London calling

For the purpose of this blog we shall call my GP 'Wonder GP' because she is really is turning out to be. 

She is the 6th GP I have seen, at the same practice, since my M.E. journey began. I chose her at random from a list of Doctor's names online when I was making an appointment over a year ago. I chose her because I refused to go back to any of the others. The fact that she hasn't yet made me cry is still quite baffling! Since having M.E. I have been reduced to tears by every other GP and have left nearly every appointment feeling incredibly despondent and alone. Not anymore. I still expect to be told that this is my fault or that I'm not trying hard enough or that I just have to get on with it. 

Yet Wonder GP has never treated me like that. And that feels quite alien. You see the stigma and misunderstanding of this condition goes before us. 

Wonder GP is actually surprised by how blasé I am about so many of my symptoms. Five years in, and after being left to my own devices by the medical world, I have learnt to accept the worst symptoms as being completely normal. It has not been easy and I still get scared sometimes but on the whole it has meant that I have regained control of my life and rather than being dictated by my health, I have almost embraced it and we work alongside each other as best as we. It would not be healthy to be focuses on how poorly I feel all of the time, and so I don't. This is my new normal. 

Anyway, I digress. So what's new?! Haha.

When I went to see my GP about my heart, she asked me to run her through my medical history and symptoms. I have purposely avoided talking about my M.E. as a whole with her. Instead I've brought up symptoms separately as and when because my past experiences have taught me that GP's do not always have a high opinion of this condition and I cannot tell you how detrimental that has been to me. 

So, for the first time, I listed off all of my symptoms. And for the first time someone has actually taken it upon themselves to solve a problem, rather than fobbing me off and sending me on my way. 

I am being referred to The National Hospital for Neurology and Neurosurgery in London to see if they can shed some light on why I get 'stuck' or paralysed. It has been a symptom I've experienced throughout The M.E. Years and one that I've always put down to M.E. because no doctor ever batted an eyelid when I mentioned it. It tends to happen when I get too hot, or after I eat, or when I am crashing after 'exertion', or dehydrated. I am unable to speak or move for a good five minutes and then I slowly get the movement back in my fingers and toes and regain the ability to speak. 

Wonder GP had never come across anything like it before but instead of ignoring it she spent time doing research into it on my behalf! Can you believe that?! I'm a little overwhelmed that she took the time and effort to try to come up with an answer and a solution. Incidentally this is the same GP who referred me to the haematology specialist when my blood wasn't clotting properly. See! How wonderful she is. 

I no longer have such intense anxiety before a doctors appointment. I no longer leave feeling deflated and defeated and worthless. It is quite telling really that I am overwhelmed by the fact that a GP is treating me a human being. That alone does more for me as an M.E. sufferer than any of my medications do. 

Wednesday, 18 November 2015

Bent but never broken

Photo taken from my Instagram indy_annaj 
On this day 5 years ago I was diagnosed with Chronic Fatigue Syndrome (I never get involved in the ME vs CFS debate so don't even try it) by a neurologist wearing a corduroy suit at the Fitzwilliam Hospital in Peterborough. Funny what you remember. It was 3 days before my 22nd birthday, a birthday I have little memory of because I was so unwell. I was sleeping on the dining room floor because I could not use the stairs. I cannot even begin to explain how poorly I was at time - poorlier than a friend who has stage 3 leukaemia. I could barely walk and had a list of symptoms covering over 2 sides of A4 paper. So many of those symptoms are sadly still present today.

I was told to have a quiet Christmas and see how I was in the new year. My mum and I were offered nothing else despite being so poorly that a brain tumour was mentioned at one point along the way. 

This Saturday I will turn 27. That 21 year old girl had no idea how strong and resilient she was and how she would need to be each and every day for the next 5 years.  She had no idea that she would lose so much of her life and yet gain so much more. Ultimately, she had no idea that it would last this long. I have been changed and bent beyond recognition by my ill health but I have not been broken. And I hope I never will be. 

I hate to think of where I would, or perhaps wouldn't, be without my incredible parents, my sister and brothers, my family, my boyfriend, the friends I've kept and made along the way, and the fellow sufferers who hold my hand when my body won't work the way it should. I have made more progress than many others in such a 'short' space of time. I may never be able to work or look after myself properly. There are many things I may never get to experience. Yet I feel like the luckiest girl in the world. 5 years ago today I could not have dreamed of the quality of life I have now.

Matters of the heart

I recently had some kind of 'episode' or 'seizure'. It was something I had not experienced before and it was terrifying. It started with an intense pain in my heart and then the feeling that my heart had stopped. Seconds later I had the feeling of heat rushing through my body and was almost certain my head was about to explode. When it had subsided I got the never-welcome temporary paralysis that has been a constant over the past five years. It is times like this that make it almost laughable that most people think of M.E. as 'just tiredness'. I avoid going to the doctors as much as possible but it was clear that I needed to get myself checked out. 

It has taken a long time for a GP to take me seriously about my concerns about my heart. Back in 2010, after my diagnosis, my concerns were met with laughter and the helpful "at least it's still beating." I am most certain that had I not had the M.E. label I would not have been treated so poorly. The GP that I have had for the past year or so has been a most welcome change from the five or six others I have seen since my M.E. journey began. Most notably she doesn't make me cry!

She wanted to do an ECG (electrocardiogram) and then a 24 hour ECG. The fact that she didn't just discount my concerns as being all in my head meant more than anyone will ever know. With the 24 hour ECG, I was asked to press a button on the small machine every time I felt pain or palpitations. I pressed it quite a lot. 

The results were practically clear. Nearly every time I had pressed the button to highlight heart pain or 'gaps' in my heart beat the results showed nothing at all. Yet another clear result making me feel like I am going insane. While there were slight abnormalities here and there they were nothing to be worried about and suggested that I could have an ectopic heartbeat. 

Rather than just send me on my way like every other medical professional has done, my GP still believed me when I said I had been experiencing pain in my heart. We talked about coming off either the citalopram, which has reduced my brain fog dramatically, or the amitriptyline, which has stopped the restless legs I get at night and helped me sleep better on the whole. I'm not keen on coming off either of those just now so we decided to start with the very low dose of propranolol that I started taking for both the palpitations and anxiety.

The pain in my heart has decreased and perhaps even stopped. The palpitations and 'gaps' in my heart beat have ceased. Alas, a resting heart rate of 117bpm isn't normal. I'm keeping an eye of it while trying not to focus on it. I know many of you will ask if it have PoTS (Postural tachycardia syndrome) but I don't believe I do and it has never been suggested by my GP.

Saturday, 31 October 2015

Happy Days

I'm not sure there are many people in my situation who get asked NOT to do any housework. Instead I am told to spend my precious energy on things that make me happy. There are never any guilt trips about how I'm able to spend my energy on certain things but not on the huge pile of washing up that builds up or on hoovering the house or cleaning the bathroom. I have been incredibly lucky to have such unwavering support from my parents, brothers and sisters, and now my boyfriend as well. 

So after over a year in the making(!!!) I have finally finished my fabric memo board and it has pride of place on the wall! I did have a little help from Popcorn, Delores and Mr Tree Surgeon for the bits that required more strength and energy than I have. 

Ta da! 

Monday, 19 October 2015

Taking stock

At some point along the way I have forgotten how to 'just be'. 

After four years of illness I entered into my first relationship since being ill and I am still learning how to be an M.E. sufferer in a relationship! It's not as straightforward as we sufferers would like. 

Until 2015 my family were solely responsible for my care. They were the only ones who saw me in my everyday, unwashed, greasy-haired state. When Mr Tree Surgeon came along I got up the courage to let him see me like that as well. I've spoken about appearance before here and here, but many will agree with me that this is not the look you'd choose when dating someone new!!!!

So I've been wanting to look nice, or at least look clean(!!!!), but I have also been worrying about him getting bored. And therefore been putting way too much pressure on myself when my health is stressful enough already. I've been fighting feelings of uselessness when he is left doing all of the housework. Of course my family, primarily my mum, have been doing exactly the same as Mr Tree Surgeon is now, but it somehow feels different. It's hard to explain but I know that some of those in the same situation will know what I mean.

I am trying to be and do too many things. I need to give myself permission to be ill. I have not been having proper rest (Purple Time) as much as I should have been. If I'm truly honest with myself the words Boom and Bust come to mind when I look back at some weeks.

I can't stress enough how this is all me putting pressure on myself. It's not coming from anywhere else. I'm not sure there are many people in my situation who get asked NOT to do any housework. Instead I am told to spend my precious energy on things that make me happy. There are never any guilt trips about how I'm able to spend my energy on certain things but not on the huge pile of washing up that builds up or on hoovering the house or cleaning the bathroom. And yet I feel like I SHOULD be pulling my weight. Such a dangerous word for us chronic illness sufferers; should. 

Well enough is enough young lady! The Activity Charts are being dug back out so I can keep track of how I am spending my energy. I have been trying to run before I walk. I have been on enforced bed rest and house arrest for a few days and I am aiming to get back into a proper routine. 

Starting as I mean to go on
The colouring itself counts as activity and can be exhausting for my poor little arm but I'm hoping I get on okay with it 
Colour coding each 15 minute time slot

I am still learning how to not feel guilty about all that I cannot do in this relationship and how to trust that Mr Tree Surgeon really is more than okay with the Anna that I am now. I need to relearn how to just be and to remind myself that I'm chronically ill and that that's nothing to feel guilty about. 

Monday, 12 October 2015

Pet Therapy

For 26 years, every birthday and Christmas I wanted one thing. A pet. Really I wanted a dog but I knew I was pushing my luck. I aimed smaller. A hamster maybe. A rabbit. Anything! My family are not pet people. The answer was always no. Yet every Christmas Eve I secretly held onto the hope that THIS would be the year it'd happen - I'd finally get the pet I always wanted. 

When I became ill it was clear that I was unable to clean out a hamster cage or take a dog for a walk. My parents had enough on their plates looking after me and so I hoped my siblings would say they'd look after a pet for me and I could just cash in all of the cuddles I'd craved. Alas, no. 

Along came Mr Tree Surgeon...

The mega-hutch! Used for only a couple of hours as they have become house guinea pigs...
Meet Popcorn...
...and Delores.
None of us like the noise of the hoover so we hide away together.

Sunday, 4 October 2015

Grit and determination

It's amazing how much it hurts to move my fingers today.

I can feel the muscles in my arms contract and relax and I move each finger. It's hard - like lifting weights at the gym that are that much heavier than you're used to. 

I am incredibly proud of myself for managing to sit up at about 12pm. It took a very long time. Hours even. If I'm sitting up it's easier to stop myself from falling back to sleep. The easy option would have been to not bother and to stay magnetised to my mattress. But that would have meant I could have easily slipped back into sleep again, and I'd already overslept. 

I would have been so easy to sleep the day away today. But my body is confused about what it needs. It does not need sleep. The repairs that happen to every human body during sleep have already been made. My body just doesn't register this fact. It craves more sleep, yet what it needs is rest and kindness. 

I want to cling on to my better routine of sleeping only at night. It somehow makes me feel like I have more control over the intense power of M.E. It allows me better quality of life to be awake during daylight hours. It's just more normal. Although it tends to take me so long to kick into gear that I am at my most 'lively' just before it's time to wind down and go to bed!!! It sounds ridiculous but I often feel I don't have the energy to fall asleep. It's such a battle - to blot out the symptoms and fall asleep. 

This is not to say that those sufferers who sleep during the day are doing it wrong. There is no right or wrong because no two sufferers are affected the same.

While I won't sleep today, I will stay here in bed, but sitting/propped up so that my broken brain can still distinguish between sleep at night and staying awake during the day. At times I will feel too poorly not to be laying down but if and when I can I will sit here and just be. 

Tuesday, 29 September 2015

Take a step back

As M.E. sufferers we get beyond frustrated by the remarks of those who don't understand. We hear people say "well at least you don't have x y or z"

But take a step back. If you didn't have M.E. and had absolutely no experience of it, what would you say? Honestly!

The majority of people respond in a way that shows how we all tend to search for a positive in a terrible situation. There might not be an obvious one but we try to find something that might offer some comfort.

Granted not everyone we come across who comments on our situation means well. But I believe that the majority probably do. 

It is not their fault that the stigma still exists. It is not the fault of medical professionals that they were taught either nothing about our condition, or to be incredibly wary of those hypochondriacs with their 'psychosomatic illness'. Yes we've pretty much all come across at least one GP who ruined not only our day with their remarks but also our confidence in the system. And that is so wrong it can't even find the words to describe it. But we must remember that they are General Practitioners. General. They must know a little about a lot. It's just a shame that the little they know about M.E. is either non-existent or scarily inaccurate. 

But...lets again focus on the majority. People get uncomfortable when the answer to their question of what do you do for a living is "Well actually I've been a little under the whether and unable to work for the past 5 years." The response is nearly always something along the lines of "Oh I'm sorry. Still, nice to get to stay at home all day." 

If you weren't a sufferer what would you honestly say?! I like to think I'd respond 'better' but it would be completely natural and not wrong at all to respond in the way that so many do.

Yes it is damaging and frustrating. But if the only experience the majority of people have of M.E. is what they read through the propaganda infused media then can you blame them? That right there is one of the reasons is started this blog. How could I ever expect anyone to understand or know the truth if I wasn't telling them...

Thursday, 10 September 2015

Another year bites the dust

Five years. Five years?! 

That's 1827 days of illness with not one day off. 

There isn't much else to say today. So I shall stuff my face with my I've-survived-5-whole-years-of-having-M.E cake!!!! With candles. Naturally. You have to milk it for all it's worth my friends. 

Wednesday, 9 September 2015

Text Club - The Beginnings

Over the five years of being a sufferer of chronic illness, I have found that it is incredibly easy to feel isolated and alone. There are so few people who genuinely seem to grasp and understand what the chronic illness sufferer is going through.

The ‘Get Well Soon’ messages soon stop because it becomes apparent that chronic illness is not something that one can recover from in the way you’d expect to be back on your feet within a few days or weeks of suffering with the flu or a stomach bug.

Text Club was an idea that came from a blog post I wrote called ‘Where Are You?!’ which highlighted how friendships struggle to last between those suffering and those struggling to grasp the reality of the sufferer’s situation. There are so many chronic illness sufferers out there that perhaps we could join together and become each other’s support system. Social media has been wonderful in this way. I have ‘met’ so many wonderful people in the same position as me who understand that when I say I am ‘okay’ it doesn’t mean what it means to a healthy person.

Why texting?

While social media is wonderful, there are times when we sufferers are too ill to get the laptop out and log onto Facebook or Twitter or check our emails. This is why I have chosen texting. It just seems easier and more personal somehow, and that is what I am aiming for. I may not always be ‘up to’ checking my emails and replying to them, but I do tend to have my mobile phone by my bed all of the time to read any text messages that come through.

I am not currently in a position to open and run a chat room. This has been suggested to me a few times now. Again it feels like more energy is required to open a web page, sign in with an email address, and then remember a password. For many of us too, looking at a screen for an extended period of time can exacerbate our symptoms.

My aim is to have us sending the odd text message to each other. Hopefully friendships will develop and the walls of isolation will begin to crumble. A daily joke or sharing something that was good about our days seems ideal, rather than focusing on the negatives all of the time.

WhatsApp messaging service

As there has been interest in Text Club on an international scale(!!!) a messaging service seems the best way forward to avoid steep mobile phone bills. WhatsApp can be found in your app store if you have a smartphone. 

It is my understanding though that you need an internet connection to use it. The app can be found in your app store and is free to download for the first year. After this I believe it is less than £1 to keep them app on your phone.

If you are in the UK and do not wish to download the WhatsApp app then please do not worry. You can still be apart of the club ;-) It's really just so that our friends across the pond can join in and not cost us all a small fortune!

Group Messaging

I will add each new member, with their permission, to a WhatsApp group named Text Club - Introductions. Alas, it is not my intention for members to be bombarded with messages and notifications. The Text Club group will therefore only be used for members to introduce themselves and then to save the numbers of the other members in the group.

If you would like to start up another group message for daily chats then I am more than happy to do this, but , like me, you might struggle to follow a conversation with more than one or two people at a time.  

Rules and Disclaimer

  • There is never any obligation to reply to a message.
  • You can opt out at any time and your number will be deleted.
  • Your number will be shared with the other members of Text Club, with your permission. With your permission, you will be added to the Text Club - Introductions group on WhatsApp where other members will be able to see your number and contact you. If you would be happier with only me (Anna) having your number then that is fine. Please specify whether you want to share your number with the other members or not.
  • Please do not share anyone’s mobile number with anyone else outside of Text Club. The only place to share numbers will be in the Text Club - Introductions group on WhatsApp.
  • There is no fee to join Text Club but you will have to pay your mobile phone provider for any messages you send that are not included in your monthly allowance. Please check your allowance. M.E. myself and I cannot cover the cost of this for you.
  • We are all entering into this in good faith. Should you share any personal details with other members you do so at your own will.

It's all a bit trial and error I'm afraid but I hope that receiving a message will give people at least one thing to smile about each day.

Tuesday, 8 September 2015

Text club

As mentioned some time ago in my Where Are You?! blog post, I thought it might be nice to have some kind of Text Club for anyone who'd like to receive a message every other day or so.

Chronic illness can be incredibly isolating, and when you suffer with an invisible illness I believe you do not always receive the support you'd expect or get if you suffered from other illnesses. 

My aim for the Text Club is to share a daily joke or something that has made you smile or something similar, and to not focus on our symptoms or our restrictions.

If you're interested in becoming a part of the Text Club, please get in touch via the Contact form on the right hand side of this page. 

It will obviously mean sharing your mobile telephone number at some point, but I am currently thinking of the safest way to approach this.

I look forward to hearing from you. 

Friday, 21 August 2015

Awful Adrenaline

I had my first fall a couple of weeks ago. I'm not entirely sure how it happened. One minute I was standing up and the next I was in a little heap at the bottom of my friend's garden steps. As chance would have it I'd had a chat to Mr Tree Surgeon only days before about what might be best for him to do if I should ever fall. My knees try to give way with every step on bad days so falling has always been a possibility. I always cling on to the banister when coming downstairs too because my dodgy vision and the feeling of being off balance don't make you feel all that confident about navigating your way sometimes. 

So the fall. Luckily, a few days before, I'd told Mr Tree Surgeon it was probably best not to try to pick me up straightaway. Best to let me get over the initial shock a little bit. He did exactly that. After throwing both his beer and his phone onto the floor to get to me(!) he then sat with me for a few minutes while I 'came too'. I couldn't speak. Shock does that to me - the shock of waking up in the morning does that to me. 

I'd scraped my arms and legs, and bumped my head. The bruises turned out to be quite disappointing actually ;-) but they've lasted a fair while. I was impressed by my body's ability to form scabs though - a couple of years ago I had to see a haematologist because I couldn't stop bleeding when I cut myself. That was a fun time!

I didn't cry. Perhaps because crying is so exhausting or because my friend was there or because I'm super brave. But we had to leave sharpish afterwards. My pain threshold is ridiculously low now and pain is so draining. The rest of the evening wasn't great. I felt a bit sick and very shaken up and fragile. 

Shock and adrenaline are not my friends. At all. If someone accidentally makes me jump by coming up behind me for example, my heart rate increases, my breathing changes and becomes laboured, and my legs get weaker. It's quite bizarre. Alas, adrenaline is like poison to me. And it is hard to convince my Broken Brain that once mainstream and normal events, such as the noise of the doorbell, do not warrant such a huge release of adrenaline into my system. It can actually feel it being released! It's quite amazing really.

Contrary to the belief's of some though, me falling over is not funny. If I was well I would have undoubtedly laughed it off, and I did actually. But falling and suchlike painful events have terrible consequences for me and my dodgy health. The effects last long after I've been picked up and brushed off. The adrenaline can leave me drained for days afterwards.

I'm okay. A little more wary of stairs and steps perhaps but thankful to still be in one piece, albeit a slightly battered and bruised one. 

Monday, 10 August 2015

The Most EPIC Adventure of Anna Jones

This was an adventure like no other. I have attended two weddings already this year. The first broke me in gently as it was an evening reception close to home. The second was a little further afield and I managed so well. Unfortunately I had to leave halfway through the wedding breakfast due to dramatic events not linked to my health (for once!) 

On Saturday I had my third wedding of the year and this was a big one for me. It required two nights in a hotel a couple of hours from home for a start! I would then be 'out of the house' from 11:30am until late into the evening, if all went to plan. There were no rooms at the venue for me to sneak off and hide in if I started to crashing run out of energy.

For a body that doesn't produce energy properly it did wonderfully well! I am so chuffed and proud of it for what it achieved and for how long and well it lasted. 

The weather was glorious and I actually did okay in the heat. I usually struggle as it zaps my energy. I even managed to laugh and chat and play boules with my favourite friends. This is the stuff of dreams for an M.E. sufferer. 

There were bits that required us to sit down and stand up quite frequently. Well frequently for me. I couldn't manage more than a few minutes of standing still at a time and so had to sneak off to sit down in the quiet. I had lots of little rests and then one big one when it was clear from my slurred speech and fever-like symptoms that I needed some time out.

The original plan was to get a taxi to the venue, half an hour away from our hotel. In the end though, my boyfriend (aka Mr Tree Surgeon) drove us to and from the wedding so we never had to wait around for a lift if I needed to leave quickly. It also meant I had somewhere to hideaway for little breaks. He's kind of awesome like that. 

I do wish I had taken my walking stick in the end. I tend to use Mr Tree Surgeon as a replacement, but it might have helped other people realise that I wasn't actually drunk in the early hours of the afternoon. Still, I should worry less about what other people think. And I seemed to be in better shape than some people!

I felt so very loved. Everyone of my friends is so wonderful with my regards to my ill health. They give up their chairs for me. Never let me go anywhere on my own "Just incase", and one in particular seems to be so in-tune with my invisible illness that she knows exactly when to ask if I'm doing okay. In the past they've cut up my food for me. Put my shoes on for me. Done the things that a mother first her toddler. They are gold. 

After a good quality rest (with no music or stimulation of any kind) in my tiny car Pascal, I managed to stay for most of the evening reception. It was obviously loud and the flashing disco lights were a new challenge but I did better than I'd have done 12 months ago, when I ended up sleeping in the dining room again. It was hard to sit and watch my friends on the dance floor. When I was well I was always the first up on the dance floor and didn't care if no-one joined me. But I'm still not well enough, energetic enough or fast enough to move in time with the music. So my lovely pals came and sat with me and we did some pretty awesome 'chair dancing'! I can manage a few short bursts of 'dancing' like that that last a couple of seconds and then I need to replenish my energy supply by resting. Do you know how good it feels and how happy my heart is that my girls will do things like this for me? 

Yes I am suffering now and probably will be for some time. But that's the way it goes with M.E. This payback will not and cannot take away from the fact that I got to see one of my best friends get married. And I got to celebrate with the people who have stuck by with throughout the last five years. It was undoubtedly one of the highlights of The M.E. Years. 

Thank you awesome little body. I love you and appreciate you more than I ever did when you worked well. 

Tuesday, 28 July 2015

The Adventures of Anna Jones - Catching up with Cara

The journey 

At the moment I am apparently doing okay with car journeys. This isn't always the case. It's incredibly hit and miss. We had the sat nav, a map, and written instructions. 

Chief Navigator!
Usually I don't have to use any energy navigating. My wonderful parents have acted as my chauffeurs since The Beginning. They've taken me to see friends who live further afield as often as I can manage, and although it has been hard to still be relying on them so heavily at the age of 26, I will be forever grateful and dumbfounded by every single thing they have so lovingly done for me. 

This particular adventure was with my boyfriend, and as it was just Mr Tree Surgeon and I (and he was driving) I had to set up...well, as best as I could. 

The hotel 

The lift was a little dodgy but we braved it when my legs weren't co-operating. The bathroom had handles of the walls to help me get in and out of the bath and shower. It wasn't an accessible room so that was a welcome surprise! 

The main event

On Saturday evening I got to see the friend who helps keep me going every single day. We 'met' on Foggy Friends in June 2011 and eventually became Facebook friends and then daily text buddies. In October last year she braved the journey and came to see me. (Meeting Cara for the first time.)

We decided not to put any pressure on ourselves and made no firm plans, instead deciding to see how we both felt on the day. By some miracle(!!!!) we both felt well enough to make it out for an early dinner. Fancy that! 
I cannot tell you how wonderful it was to have a proper hug! There are some people who've I've met along the way with whom I only seem to have illness in common. Cara is not one of those. 

For over 2 hours we sat and chatted and laughed and ate as if seeing each other was the most natural thing in the world. Many 'normal' people turn their noses up at online friendships but they are a lifeline for so many chronically ill people. 

All smiles

To be in the presence of someone lovely is always wonderful, but to be in the presence of someone lovely who genuinely and wholeheartedly understands your situation is perhaps the best medicine of all. And the ultimate silver lining. I was pleased too that our boyfriends had each other to talk to as they are both in the same position; dating (lovely) ladies who suffer with chronic illness. 

It was the happiest time. 

Zoo Day

In December I decided to enter the dating game (Are we the real Undateables?) for the first time since being ill. 8 months on and Mr Tree Surgeon hasn't managed to shake me off yet. He is an absolute diamond, especially when it comes to accepting and understanding my limitations. While we were away we thought we'd have ourselves a little day trip.

Zoo Day marked the first time he would see me in my wheelchair though. I was not keen on him seeing me in it. I can't help but feel vulnerable when I'm leaving it to someone else to be incharge Don't underestimate how much bravery it takes to use a wheelchair when you've lived such an active and independent life before. 

Not too happy about the wheelchair or the rain but it did't dampen our spirits!
Happy faces. Introducing Mr Tree Surgeon.

I imagined there would be tears. How could he not see me as a burden or the poorly person I have become if he had to push me around all day? Yet the only tears that escaped that day were tears of laughter. It was my best wheelchair experience to date. It was a complete none-issue. I can't even describe how normal it felt to us; to have him pushing me around. 

Emergency breaks!

The bad bit

You'll probably be reading this and thinking "Gosh she managed a lot in such a short space of time. Silly girl." You may be right but every once in awhile we poorly people need to live a little. Alas it comes at a cost.

On Sunday night I was really quite unwell. It didn't feel like payback as such. More of a seizure. The rain had left me cold and if I get cold during the day it can stay with me for hours and hours afterwards. Like many people with M.E, my temperature regulation is shocking. My bones felt cold yet apparently my skin was boiling. With muscle spasms and intense fatigue and malaise it wasn't my happiest time. 

I probably hadn't drunk as much as I should have that day, despite being organised with snacks and drinks. Fluids seem to help during my crashes yet one small cup of water made me need the loo three times. This is very common for me. But always problematic as I can't really walk by myself during a crash. Not by myself. Luckily Mr Tree Surgeon is rather strong! And he must be because I'm not small! 

It wasn't the end to such a lovely weekend I'd hoped for; my boyfriend practically carrying me to the bathroom and actually having to lift me onto the toilet. I sobbed my little heart out as he did so. I'm incredibly lucky that he is more the willing to do such things, but I hate that his role now comes under carer too. 

No girl wants their boyfriend to have to help them use the bathroom like this. It felt quite devastating, yet I know I am lucky. 

Tuesday, 14 July 2015

Baby steps

Who'd have honestly thought I'd be starting my 5th Summer of this?! 

School holidays have tended to be the hardest times for me I think. Not that any of it is particularly easy. Some of you will know that my family runs children's activity camps during the school holidays. For as long as I can remember I either attended as a child or worked there. For six weeks of the Summer I'd be living in shorts and my purple t-shirt doing a job I absolutely adored! I'd be Queen of Reception and knew everything that needed knowing about the running of the camps. 

The Last Summer. Bum-bag swag...
The Summer of 2010 was perhaps the best, or maybe I've just attached so much meaning to it because it ended up being my 'last Summer'. 

For a long while school holidays could reduce me to tears. There was no escape from what I was missing out on. Distraction was hard because the house was full of equipment and paperwork and the phone was ringing constantly with customers making bookings. The feeling of being replaced is the hardest one I'd had to contend with in the last five years. 

The happiest days

This year though I have managed to contribute in perhaps the smallest way ever but it's been celebrated as if I'd single handedly run all three sites by myself. Ahead of the Easter holiday camp I managed to sellotape some paperwork together!!!! My handwriting, which had been unrecognisable because of my weak M.E riddled arms, is now back to normal 99% of the time. And with my improved concentration I could trust myself enough to do some of the little admin bits that needed doing. 

That was a few hours work one day. I am an incredibly, INCREDIBLY long way off from being employable aren't I?! But this summer I managed to help again and over the course of three days I laminated about 30 pieces of paper!!!!!

Celebrating the 'little' things!

It's sad that the girl who could work from 8am until 6pm everyday and then go out socialising with my work friends now cannot even take phone bookings because phone calls require too much energy and concentration. Yet if I choose to focus on the two tiny but huge contributions I've made to the family business this year, I can't help but feel incredibly accomplished and proud actually.