Friday, 15 May 2015

ME AWARENESS WEEK: JARED A CARNIE GUEST POST PART 3/3



Things We Have To Consider
Part 3/3
Read Part 1 here Read Part 2 here



7) The Watching Dilemma

Faye watches Pretty Little Liars. She likes Don't Tell The Bride and Celebrity Big Brother. She doesn't claim they are any good – she just says she enjoys watching them. She says they are perfect for when her brain is not functioning. Of course, I remember her watching those shows before she was ill too, but I try not to bring that up.

Besides, I'm in no position to judge. First of all, she watches those things when I'm out so it's not like I'm affected in any way. And secondly, I watch football. It's not like I can claim any moral or intellectual superiority for spending my time watching a group of wealthy preening idiots running around after a ball rather than watching a group of wealthy preening idiots running around after an elusive murderer called A.

Those differences aside, Faye and I do love watching things together. Would we love Parks and Recreation had we watched it individually? Probably. It's great. Would it seem as significant a part of our lives had we not watched it together? Probably not.

There are certain things we know we will want to watch together. We worked through the West Wing. The Office (both). 30 Rock. The Newsroom. Six Feet Under. The Wire. Deadwood. We're waiting for the last episode of Mad Men.

In the case of more serious shows, these tend to feel like they are only worth watching if you can give them your full attention. We know they will requite an initial bit of input to get on board, to learn the characters, what's happening etc. However, this can be pretty tiring. It can put pressure on Faye to really focus – and nothing saps energy like worrying you're running out of energy.

Recently, after hearing plenty about The Jinx, we decided we wanted to watch it. Twice we sat down with it on and both times the barrage of information was too much for Faye to take on board. We decided to put it off for another time. Now we have to decide whether it's worth it. Television is meant to be enjoyable, not exhausting. It's no great tragedy to not be able to watch something. We know that. It's just unusual to factor in the fact that the effort it takes to watch certain things might be too much now.

In the first year of our relationship, pre M.E, Faye and I went to see Midnight in Paris in a cool independent cinema. I was a big fan of Woody Allen (the director, not the rest) and was convinced Faye would enjoy the film. She was excited to see something she knew I was interested in. She wanted to understand why I liked it.
Now, even putting aside all the difficulties of actually getting to a cinema, the overwhelming noise/lights etc, the simple small pressure of feeling the need to concentrate for ninety minutes might make a similar experience too daunting a prospect now.


8) The Conversation Dilemma


I like talking to Faye. Obviously. That is why I live with her. Talking to Faye is one of my favourite things in the world. Sometimes I don't even know my own opinions on things until I talk to her and she challenges me to actually form my thoughts into something that makes sense. When I get in, ideally, the first thing I'd do is talk to Faye. I like hearing about her day. I want to know how she has felt. I want to know if she managed to do anything towards starting her own business.

The thing is, if Faye has had a successful day, if she spent the afternoon at the computer and managed to do a little typing, the last thing she then needs is to have to focus on conversation for a while. If Faye hasn't had a good day, she doesn't want to have to re-live it. She especially doesn't need to hear me talk about work or anything else when she's struggling to manage to even put two words together. But then, we do live together, we are incredibly close, how do we decide what is and isn't worth talking about? If Faye had a really rough day and can't tell me about it, how can I help to try and make sure it doesn't happen again? If something happened to me at work and I don't tell Faye about it when I get in, days might pass before it comes up again, in which case Faye feels out of the loop. It's tricky.

Faye and I like to tell each other everything. It's fun, funny and kind of reassuring when you can be totally and embarrassingly honest and have someone else just take it in their stride. In general, it's what works for us. The thing is, now, we have to pick our moments. Sometimes intense conversation is the last thing Faye needs. She won't be able to express herself properly and it'll be frustrating for her. Or she'll spend so much energy talking that by later in the evening she won't be able to focus on doing something else. What do we prioritise? The talking or the doing?

It's important not to dismiss silly conversation as wasted effort too. Relationships aren't just built on the big things. You don't live with someone just because you want them there when something terrible happens. You live with someone because you want them there when nothing much is happening too. Faye is who I want around if I have to go to a funeral. Faye is who I want around if I want to sit in the living room in my boxers and eat breakfast. It's important to make sure we share the important things, but it's also important to remember to not only limit ourselves to the conversations we feel we have to have in an effort to preserve energy, as it's the silly stuff that keeps us just as close as anything else.


9) The Plan Dilemma


Life is what happens while you are busy making other plans. John Lennon said that, amongst a range of other things including “Imagine there's no heaven” and “I am the walrus.” So you do have to pick and choose with that guy.

Because this is the thing, sometimes planning is important. Led Zeppelin have played live once in the last twenty years. If you wanted to see Led Zeppelin, it was probably best you tried to get a ticket for that one gig, planned your travel, made a note of the exact date etc. Just sitting around assuming that one day somehow you'd accidentally stumble into a Led Zeppelin gig doesn't seem like the best tactic.

And no matter how poorly you are, sometimes you will become aware of things you want to do at certain times. Whether it's going to a gig or simply having a Christmas present ready, these things are time sensitive. The specific timing of them is what gives them their significance. And sometimes that's great. If Faye is having a really awful spell, if she's stuck in bed unable to move for days on end, it's always nice to be able to point at the calendar and say “look! It's only one week until your mum comes to visit!” Having things planned is great. It gives you things to look forward to, it helps you know during the low times that there are good things on the horizon.

But that can bring stress too. For example, this Sunday, May 17th, we have planned to have a couple of friends over for a cup of tea for Blue Sunday as part of M.E Awareness Week. Now, these are incredibly supportive and understanding friends, there is no pressure to perform for them or for Faye to pretend she is feeling any better than she is, but still, the presence of a set appointment, a set time and date, puts the idea out there that ideally you should try and be feeling as capable as possible at that time. And of course, worrying about that is what saps the energy most.

Sometimes it's a fine line to tread. I like trying to arrange things for Faye and I to do – at home or outside if possible. I like having things coming up to give our lives a feeling of momentum. However I never want to put pressure on Faye. I never want her to worry about not being up to managing something. I always want her to know that nothing is really set in stone, things can always be changed, and that's not disappointing.

The way Faye and I look at it, there are an infinite number of possibilities, an infinite number of numbers. And yes, M.E might have ruled out all the even numbers, but that still leaves us with an infinite number of odd numbers to play with. And some times, M.E might have ruled out all the even numbers and all the multiples of five and even all the numbers ending in seven and nine. But that's ok too. There's still an infinite number of numbers ending in one or three. We just have to be imaginative to capture them. There's always choices, and having to opt out of something just puts you in a new situation with new choices to be made.



More Jared: www.jaredacarnie.com
Pre-order Jared's novel Waves on Amazon

Share:

ME AWARENESS WEEK: JARED A CARNIE GUEST POST PART 2/3


Things We Have To Consider
Part 2/3
Read Part 1 here

4) The Clothing Dilemma


Faye is 25. She is (despite what she would tell you) stylish, pretty and slim.

However, fashion isn't the main thing to take into account when Faye gets dressed. Yes, she feels better if she manages to get out of bed and into day-clothes. But is it worth it if she'd be ten times more comfortable staying in her pyjamas?

Perhaps Faye has some jeans she wants to wear. If she then sits for too long or eats or drinks suddenly the denim becomes too uncomfortable and distracting for her to be able to focus on anything else.

Even if Faye does manage to get out of the house in a nice outfit, by the time we get home she will likely be so exhausted that I'll have to lift a dress over her head or help pull off tights etc. If she's spent time putting on make-up beforehand too, this could use up extra energy and make the time she can survive out of the house even shorter.

As for high heels. I've been trying to orchestrate a situation where Faye can wear them. She says she misses being able to feel nice in a heeled pair of shoes. For now though, they tend to not be too practical in the wheelchair. And I'm not sure the walking stick is even long enough to support someone wearing giant heels.



5) The Public Dilemma

Faye has faced some pretty rude reactions from people in the past. They range from giving her odd medical advice to outright telling her it's disgraceful that she is using a walking stick. These are horrible situations for Faye. Aside from being treated with hostility, which is distressing in itself, it becomes tricky to know how best to respond. Is it worth getting involved in an exhausting exchange in the hope that somehow the other party might relent and learn something about M.E? Or is it best, as Faye understandably tends to do in those very stressful situations, to smile politely and nod and not waste the energy?

If we're not taking opportunities to challenge ignorance do we have the right to be surprised when we come across it? But then why should Faye have to spend the rest of the day in bed over a small exchange that the other person will have forgotten five minutes later? When M.E takes so much of Faye's day as it is, why should it get to take even more just as a result of Faye having to explain what M.E actually is?

Of course, this is the catch 22 situation. You would hope that if you do explain enough times, if you do educate people, even though you will repeatedly exhaust yourself, eventually a point will be reached where you no longer have to explain anymore – people will already understand. However, this is incredibly difficult when there is the other, more easy option, of not engaging. Of course, that other option, whereby you skip the discussion to limit the devastating emotional and physical consequences, means that less people are being exposed to the reality of the situation and so those situations will continue to exist. It's an unfair burden for anyone to have to deal with.

Sometimes, people are polite and curious. Sometimes they listen when we explain M.E. They say they'd heard of it but only in the context of 'yuppie flu' and had no idea of what it was really like. Quite often though, people don't like being unable to pigeon-hole something. If you can't point to the bit of you where it happens, if you can't explain how you got it and how you get rid of it, people start to become more cynical and dismissive.

When I'm on my own, I do generally try to take the time to inform people as much as I can when it comes up. I have to admit I've been involved in a couple of conversations where people have turned out to be knowledgable and incredibly supportive. However, these are rare enough that they really do stand out as anomalies. It's so warming when you hear someone say “that's awful, it's so misunderstood isn't it? People don't know how serious it can be.”

I have to admit though, I've even found myself as a convenient shorthand telling people “you go first, Faye has a bad leg and I have to help her up” or something similar in order to quickly get people to move past so that I can continue helping Faye. There's no excuse for that, I should be trying to get across to as many people as possible the reality of the situation, but realistically, shamefully, sometimes it's just easier to have the shortest interaction possible so that you can carry on with the day. That way you don't have to worry about taking the time to explain and any reaction you might get.

Sometimes people's responses can drive me a bit nuts. They're either completely unaware or think they have the perfect solution. Once a woman told me that if Faye stopped drinking milk she would get better right away. It happened to her friend so it would happen to Faye too. Faye and I actually had tried various exclusion diets early on – so I tried to explain to the woman that there was more to it than that. I asked whether her friend had needed a wheelchair as a result of her condition. The woman became quite rude. She said Faye didn't need a wheelchair. She seemed to think she was offering me a golden ticket and didn't understand why I was refusing it. She insisted. Faye needed to stop drinking milk. That would solve every problem we had.


6) The Music Dilemma

I love music. Too much. Seriously. I don't have a particularly refined music taste. I don't get Mozart or even Coltrane. I just love listening to music. All the time. When I get up. When I make breakfast. When I walk to work. In my office at work. When I go to get lunch. Etc etc. It's endless.

Music informs a lot of my favourite memories with Faye. There's an album that had come out just before we went to Paris. We had our own flat and each evening when we had dinner on the balcony we listened to the album in full. Now whenever I hear it I think of Paris. Another album came out one summer when Faye and I started seeing each other. She would drive over to my work, pick me up, and we'd listen to the album while we drove to find somewhere to lie in the sun.

There were gigs too. We saw Daniel Johnston in a church. We saw Manic Street Preachers play every one of their singles at the O2. We saw Gaslight Anthem in a tiny London venue just before they first made it big on the radio. We saw Patti Smith and Bob Dylan at Hop Farm.
When we first moved in together we'd listen to Little Richard and Ray Charles and Aretha Franklin in the kitchen while we cooked. Faye would dance around while she measured things out. It made cooking one of our favourite things to do. Our house always had music in the background. This was all obviously before M.E.

Now, it's more tricky. Certain sounds hurt Faye's head. Anything too distorted is like a chainsaw to her brain. That's ok. I don't need Nine Inch Nails over my breakfast anyway. But it's an issue at other times too. Sometimes Faye will want to sit in the kitchen while I cook. I like having her there with me. It feels more communal. Occasionally I try to put music on but often it's too much. It's too difficult for Faye to focus on talking with all that background noise. She finds it more tiring simply being in a room where music is playing. If I cook for half an hour with music playing, by the time we have eaten dinner Faye may already be exhausted, and I have to think that perhaps if I hadn't had the music on, after dinner Faye would have still had a little energy to do something else. It's a difficult balance to strike. Faye still does love music. She just needs to make sure she's in a position to enjoy it rather than endure it.

It's still one of my greatest joys when I'm listening to something in the house and Faye tells me she likes it. However, now I have to pick my times more carefully. It's not worth bombarding Faye with excess noise if it means I don't get to see as much of her.



More Jared: www.jaredacarnie.com
Pre-order Jared's novel Waves on Amazon

Share:

Thursday, 14 May 2015

ME AWARENESS WEEK: JARED A CARNIE GUEST POST PART 1/3




Things We Have To Consider

Part 1/3

Faye has M.E.
Faye has a thirst for life.

These are two undeniable truths. They are also two truths that butt heads constantly in our day to day lives. We have to respect both. To solely focus on M.E would be to leave Faye feeling unfulfilled. To plough ahead mindlessly ignoring the difficulties and consequences that come with M.E would be foolhardy and potentially disastrous.

Faye asked me to write something for her blog and I wasn't sure I had anything to offer. I don't feel that I have either the knowledge or the right to offer any insight into M.E. I have nothing to complain about either. My life is great. I'm certainly not the right person to write about how difficult life with M.E can be. And to write anything indicating that life with M.E isn't difficult would be downright dishonest.
Instead, I figured I would write about trying to find the right balance between managing M.E well, and managing our lives well.



1) The Social Dilemma

One of the best things about moving to Sheffield was being near a couple of Faye's best friends. They have been incredibly supportive. They'll pop over every now and then and aren't offended when Faye says she isn't up to it. They even drive over to pick Faye up so she can come to their house instead. To be able to get out of the house isn't something that should be under-appreciated.

There are evenings where Faye is doing well. She is feeling great to be with her friends. She is enjoying a cup of tea and managing for the most part to follow the conversation. She is doing better than she usually manages. This is where it gets difficult. If she stays out longer, if she waits until she stops being able to follow conversation, until she feels herself starting to stutter and struggling to talk, she has obviously pushed herself too far. She knows there will be payback tomorrow. However, if she doesn't have plans tomorrow, maybe she's ok with feeling terrible in the morning? It's certainly easy to feel that way at the time. It's why people will always accept extra shots even though they know they're going to have a hangover in the morning. It doesn't seem relevant at the time.

The sensible thing to do would be to leave. To cut it short. To end the evening while Faye is still feeling reasonably in control. But it's difficult. Maybe she hasn't spoken to her friend for weeks and half an hour wasn't enough time to catch up. Maybe they don't know when they will be able to see each other again and it seems a shame not to make the most of the time they have together. The problem is, pushing it always has consequences. And those terrible days and weeks of fatigue are what we are trying our hardest to avoid where possible.



2) The Work Dilemma

Faye and I are idiots. We make life decisions based on nothing at all. Seriously. Yesterday Faye told me about a blog she likes where the writer had moved to Bali. Now we are both under the impression that we're going to do the same thing. We'll operate under that assumption until something new and shiny distracts us and that becomes our new plan. Last week some friends of ours said they were considering moving to the South West. By the end of the evening Faye and I had decided we were moving there with them. Now we have to break it to our friends that we're moving to Bali instead.

Knowing all this, it should come as no surprise to you that we moved to Sheffield from the Isle of Lewis without any set plans. I had no job sorted. Not even an interview lined up. I remember standing in our kitchen on Lewis and saying to Faye “if they have an ME/CFS centre in Sheffield and you're already familiar with the city (Faye did her degree there) surely it'd be a good place for us to live next?” I mean, that's not verbatim, but it's the gist of what I said.

“You're right, let's do that” Faye said. So we did.

So we arrived in Sheffield to a rented house we had not seen (our very kind friend Sasha had visited it for us) and no work plan.

Fortunately (especially given my lack of talent/qualifications) I got a few interviews and subsequently a job very quickly. It was three days a week at the university. The pay just about covered rent and we had saved enough the couple of months previous to cover bills and stuff for a little while. The contract was only for three months but it was money coming in until I found something more substantial. Plus it gave me more days a week at home to help Faye – which after an exhausting move seemed particularly important.

We soon got into a fairly decent pattern. I was getting to know the city little by little, work wasn't too tiring at three days a week, and Faye was enjoying (or at least so she said) having me around more. We even managed to get the wheelchair onto the bus into town every now and then.

I got an extension offer on my contract – six more months and five days a week. It was a miracle. I'd been looking for other jobs but it hadn't been going too well. Five days a week would just about cover rent and bills and we were running out of money fast.

The issue was, we were doing better. We were managing better. The extra time was allowing us to do more together. Not only that, it also gave Faye the safety net of me being around so she didn't have to worry about wasting energy on making meals etc.

Ultimately, I had to take the contract. We didn't have much choice and we knew I was very lucky to have been offered it. Sometimes we do think though, if only I had a little extra time to help Faye at home, maybe she'd be able to manage more. Of course, if I was working less, we probably wouldn't be able to afford a home to be together in, so perhaps this isn't as much of a dilemma as it first seemed.

In fact, I'm sure most people probably think If only I didn't have to work. I could write a great novel or run a marathon. Of course, if they were given the time, they wouldn't do anything, they'd re-watch Breaking Bad and lie in more. The thing is, for a moment, we had a glimpse of what we could do if I did have more time at home to help Faye, and we did do it. Only in our case, the marathon wasn't 26 miles, it was making it to the bus stop. Although as anyone with M.E will tell you, for them, that's no less an achievement.

3) The Chocolate Dilemma

A very tricky one.

When Faye is feeling particularly terrible I start scrambling for anything that might cheer her up. I think there are probably three foolproof possibilities. Three things that were I to bring them home would immediately make Faye feel better. They are as follows:

1) A puppy
Fortunately, we do already have a mad little dog, Teddy, that keeps Faye company during the day. Unfortunately, our house is not big enough for me to bring home a new puppy each week, so I have to rule this one out.

2) Ryan Gosling
Unfortunately for Faye, and fortunately for the self-esteem of men across Britain, Ryan Gosling actually lives on the other side of the world. As a result, he is not something I can pick up from Tesco on the way home.

This leaves me with:

3) Chocolate
As pleased as Faye is to see me when I get home usually, nothing compares to the expression she has when I come through the door carrying chocolate. This tends to not only help her mood but also sometimes help her body feel a little better too. Unfortunately, it's not always that sensible.

Whilst chocolate might feel like the thing a poorly body most craves, taking on board that much sugar is often counter-productive for a body trying to find the strength to recover and function more efficiently.
This is probably where our self-control lets us down most. When I'm desperate to find something to cheer Faye up, I often opt for chocolate even when I know I shouldn't. And if I do leave Faye in bed with a big bar of galaxy next to her, who can blame her not being able to resist digging in?

 Part Two          Part Three

More Jared: www.jaredacarnie.com

Pre-order Jared's novel Waves on Amazon
Share:

Tuesday, 12 May 2015

WHY ME / CHRONIC FATIGUE SYNDROME AWARENESS IS IMPORTANT


Despite having lived for almost two years with widespread pain and weakness that makes it difficult for me to pour a cup of tea or walk even short distances, I frequently feel overlooked when I visit my local doctors surgery.

Whilst living in the Outer Hebrides, my health steadily declined to the point where I was no longer able to work or look after myself. I was diagnosed with ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome). When I later moved back to mainland UK, registered at my local GP practice and explained this, I saw the look on the doctor's face turn from friendly interest to thinly veiled exasperation. With an eye-roll she asked "Who gave you that diagnosis?" and set the tone for a succession of dismissive encounters that would make me feel like a nuisance and a time-waster.

Very fortunately, after repeated requests, I was referred to a specialist ME/CFS service. Through this, I have been lucky enough to speak to a GP who works exclusively with ME/CFS patients. Having confirmed my diagnosis (by a process of elimination following blood tests and interviews), this doctor among other things said the following:

"I know it is a very real, physical, debilitating illness"

On hearing this, I burst into tears. Unlike on other occasions when I'd cried mid-appointment, my tears were not of sadness or frustration but of happiness and relief. Having my life turned entirely on its head by ill health had been hard enough without facing misconceptions about the legitimacy of my condition. I needed to hear those words far more than I'd realised. 

When I discussed challenging interactions I'd had with other professionals, the GP at the ME/CFS service explained that sadly my experiences are not uncommon. When even those with a special interest in medicine are ill-informed and harbour judgement, it is unsurprising that many others without medical training have the wrong idea of ME/CFS.

Having lived with the condition for what feels a long time now, I still struggle to get my head around it entirely so I don't blame others for their lack of understanding. I think most confusion about ME/CFS probably stems from its fluctuating nature and wide-ranging variability. While all sufferers have core symptoms in common (overwhelming fatigue that does not go away with sleep or rest, cognitive problems, flu-like symptoms following any form of exertion), the severity with which they experience them and the other symptoms that come alongside may vary significantly. Those mildly affected may be able to look after themselves but need time off work to rest. Those moderately affected may have reduced mobility and need some help carrying out day-to-day tasks. Those severely affected may be unable to feed themselves or sit up. Some have even died. Symptoms fluctuate across days/weeks/months, meaning that although on one day a sufferer may be able to do something, there is a high chance they will need days/weeks/months to recover from the exertion before being able to do the same thing again.  In short, no two ME/CFS patients look the same and how someone appears on any given day may not be indicative of their true level of functioning.

I am incredibly fortunate in that I have seen some improvement in my health. While I am still restricted and never escape the flu-like symptoms or 'so-much-more-than-ordinary-tiredness' fatigue, I am able to spend time with friends and am taking steps towards self-employment. Sadly, this is not and may never be the case for others. Some sufferers are confined to dark rooms for years on end unable to tolerate noise, light or conversation for even a few minutes at a time with those they love. This was reality for me for only a short time and just thinking about it fills me with overwhelming sadness. It felt bleak, lonely and terrifying. I hate to think of people suffering in this way, shut away from society's eyes, unable to speak up for themselves, facing stigma attached to a condition which has already taken so much.

Whatever its severity, ME/CFS is life-altering and debilitating. While not all sufferers have visible indicators of their illness, they have to work that bit harder to get through every day.

Ultimately, even the understanding doctor I spoke to was not able to offer a great deal that would help me as there is currently no cure for ME/CFS. While some treatments may help some sufferers, they do not work for everyone and it is more a case of carefully managing activity levels and symptoms. The knowledge that someone believed in the illness that had turned my life upside down though was some comfort in itself and I think its the very least all sufferers should be afforded. 

Funding for research is urgently required if ME/CFS patients are to see better outcomes so I will provide information about charities at the end of this post. However I appreciate that not everyone is in a position to donate. A major thing anyone can do though is gain a better understanding of the illness, affecting an estimated 250,000 people across the UK,  and share what they've learned with others.


M.E. / CFS Charities
The ME Association: http://www.meassociation.org.uk/
Action for ME: http://www.actionforme.org.uk/
ME Research: http://www.meresearch.org.uk/
Association for Young People with ME: http://www.ayme.org.uk/

My Jewellery Etsy Shop (all profits go to the ME Association):
https://www.etsy.com/uk/shop/frecklesandallshop

Videos about ME / CFS
Emma: https://www.youtube.com/watch?v=S5wj2B9PPzw
Meg and Hayley: https://www.youtube.com/watch?v=EYCS027EqA0

Share:
© BearHugs & Beyond | All rights reserved.
Blog Layout Created by pipdig