Category Archives: Living with an Illness

ME and Deeper Shades of Birthday Blues

ME and Deeper Shades of Birthday Blues

For as long as I can remember I’ve never really cared for my birthday, and that sentiment has only become worse since I became ill. That dreaded annual event rolled around again two days ago and I felt so down for weeks prior to it. I’m 37 years old and I’m ill again and I just felt so tired, old and useless. I rarely feel that way, but something about my birthday brings out the most dispirited side of me.

I was 25 when ME/CFS hit; I had love, laughter, friendship, a career in a brilliant company and plans, lots and lots of plans. All of that went away for 10 years, so I was in my mid-thirties by the time I next resurfaced. I managed to catch up a little but then I drowned again and now it seems the closer I get to 40, the more I feel the loss of that time.

This year was the worst because exactly one week before my birthday was Uncle Giani’s birthday. Uncle Giani isn’t my flesh and blood uncle, but he’s dearer to me than most of my blood relatives. His daughter is one of my dearest friends and the whole Giani family took me in and looked after me while I had medical tests done and tried alternative treatments just after I was diagnosed with ME. They loved me, cared for me and put up with my erratic mood swings during those difficult months when I was far away from my own family, friends and life.

Last year, Uncle became ill and the prognosis was not good and his health has slowly been deteriorating. Last week on his birthday, I knew it would be his last one and somehow that realisation really affected me. I thought it would have made me feel more positive and hopeful about my own birthday; ‘make the most of each day’ etc etc, but it did not.

All week I’ve been wallowing in the birthday blues and abject misery at what I knew was coming for Uncle Giani. Then, as I woke up to my own ‘Happy Birthday’ messages, I also received the message that I had been dreading; dear Uncle Giani had passed away. I’ve had people I love die before, but I seem to be taking Uncle Giani’s death particularly hard. It’s not just that he has gone; thinking about his wife, daughters and granddaughter just breaks my heart.

It’s too early yet for me to draw any kind of lesson from all this; it still feels so raw. I am just grateful that the last time that Uncle Giani and his wife visited London was when I was going through my good phase and I was able to spend time with them and take them around the city. I’ll always have that.

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A Positive ME Sufferer or a Negative One

A Positive ME Sufferer or a Negative One

I’ve been asking myself a lot recently if I’m a positive ME sufferer or a negative one. What do I mean by this? The whole purpose of writing this blog and my other articles is that I’ve wanted to be able to provide a relatable account for other sufferers. When I first became ill, talking to and reading about other sufferers is what helped me the most. I’ve always felt it was my duty to put my story out there. Before I come across as too much of a martyr, it has also helped me immensely to write about my experiences. Actually, at first it was really painful to write about ME, but now it is easier and helps, especially when things aren’t so good. Recently things haven’t been so good and that is what brings me back to wondering if I’m a positive ME sufferer or negative one.

Ideally, I’d love to think of myself as writing hopeful posts which have a positive effect on readers, but the truth is my experiences are not always positive and I’m not always emotionally or mentally in a place to be able to put that kind of a spin on them. Sometimes – more so recently – it seems all I have to write about is the darker side of being an ME sufferer. So, I find myself going to and fro between wondering how awful it is to dwell on the bad so much and thinking that negative or positive, it is an honest account of my experiences.

The truth of the matter is that there is no such thing as a positive or negative ME sufferer, not really, we just have good days and bad days. Also, being ill and spending too much time alone drives us to think too much and to question aspects of our lives.

Like I’m doing now.

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Repeating Mistakes: Not Giving ME Its Dues

Repeating Mistakes: Not Giving ME Its Dues

Just before Christmas I wrote A New Lesson in Loneliness For a ME/CFS Sufferer where I talked about not giving the illness its dues and how I would try to be more aware. Not even a fortnight after that, I was making the same mistakes again. A friend contacted me recently and told me that he will be visiting London with his girlfriend at the end of the month for a long weekend. I was so excited and we were happily making plans for all the things we would do while they were here. I vowed to keep my schedule free and make myself available while they were over.

The next day I went out for a walk and I have had a sore hip since then and yesterday nerve pain flared up in my thigh. It was a painful reminder that once again I had totally forgotten that I have ME. I don’t understand how I keep doing this these days. I lived years only being aware of my illness and symptoms; they ruled everything I did. Now, it is almost like I forget I am ill; it stares me in the face all day every day and still I don’t notice it.

Yesterday I had to send my friend a rather sheepish message admitting that I was not as physically able as the rest of them, but that I would attempt to join in while not hampering anyone else’s enjoyment. I actually feel rather stupid; how could I imagine that I would be capable of a long weekend of activity? The truth of the matter is that the way my health is at the moment, I’m just getting up to being able to do the normal basic activities and not having any repercussions. Then how is it possible to forget that fact?

I find myself thinking a lot about that time when I was miraculously better again after 7 years, and mentally I seem to be stuck there. I think it is good to keep it as a goal and even better to use that time as a reminder that it is possible, but I’m not doing myself any favours by forgetting that I’m not like that anymore and instead keep repeating mistakes. If I ever want to get back to that level of health and activity, I have to get very real about what I can and cannot do right now.

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Starting the New Year Crawling Out From Under a Relapse

Starting the New Year Crawling Out From Under a Relapse

It’s day two of the New Year and I am only just crawling out from under my latest relapse. I thought I was on an even keel health wise, having recovered from the flu that swept through me back in October, but how wrong I was. I invited my sister over for dinner on 27th December, but it was all too much for me; far, far too much. So I’ve been sleeping almost non-stop since then and in a lot of pain with joints and back.

But I’m feeling less dead today, so have been thinking about what I want from 2013. While I don’t make resolutions specifically for the New Year, I am always setting myself new goals and I am a constant dreamer. My main goal for the coming weeks is to get some kind of routine down; I seem to be in a boom and bust cycle at the moment. I need to establish a base level of what I can do and then try to gradually incorporate more activity from there. This was my goal for 2012, but I more or less spent the year on the roller coaster of ME/CFS with little or no control.

I know this is possible, because I’ve done it before; I managed to live not just a relatively normal life, but a wonderful one. I just went a little crazy and forgot I had ME/CFS and came crashing back down to Earth. But you live you learn, and I won’t make the same mistakes next time.

I just want life to be easier and happier; less stressful. Rather than setting myself huge goals for the whole year, month or even week, I think it’s time to take it one day at a time and push forward that way. My focus is not just on health, but on work, writing, relationships and happiness. I want to enjoy my life, rather than always planning for the day when I will be able to do, or when I will have, etc etc. Just focusing on daily activities will take the stress off, no matter what.

So, I’m feeling sluggish, but hopeful. Happy New Year, may each day be wonderful in it’s own right and one step closer to the fulfilment of dreams!

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How I Survived Christmas and the Movies That Helped!

How I Survived Christmas...ME/CFS

It’s the evening of the 25th as I write this, so Christmas is not quite over, but this will be my last Christmas post of the year. The last couple of days haven’t been great so I was expecting today to be extra depressing, but I’ve actually had quite a good day.

I woke up this morning and just lay there for ages listening to the rain. It was lovely and peaceful and I can’t remember the last time I was so relaxed upon waking. I chatted to my sister Nik for a while via Blackberry messenger; she’s been very sweet and made herself available while I’ve been in my Christmas slump (Thank you Sis – Love you!) and then around 1pm I took a nap…for several hours. So when I woke up in the afternoon, I felt quite rested and was ready to think about food and what I was planning to do for the rest of the day.

I spoke to my parents and then made myself some lovely pasta with salmon (Merry Christmas Baby!) and knew that I was going to indulge in some of my favourite Christmas movies, but before that, I needed some Stewie Griffin.

Family Guy: Road to the North Pole

This is not exactly a movie, but it is a double length episode of one of my favourite shows. ‘Family Guy‘ is the television equivalent of Marmite and I love it, and this is one of the best episodes. After being snubbed by a mall Santa, Stewie decides to travel to the North Pole to kill Santa. But when he gets there with Brian he finds that all is not well with the big man or his helpers.

I’m a huge fan of all things Christmas, but combine that with a ‘Road to…’ episode of Family Guy and what is there not to love?

The Holiday

One Christmas when I was very ill, I watched this movie every day for a fortnight when they first showed it on Sky Movies. I still love it. I can’t even get specific about what I love about this film, because the truth is, I just love everything about it.

Back when I first watched it, I loved the fact that it was a Christmas film, but not Christmas-sy. I dreamed of being able to jet off somewhere and find a new life, a new love at that time in my life, and watching ‘The Holiday‘ was perfect because it allowed me to do just that with Amanda and Iris. I love the main female characters played by Kate Winslet and Cameron Diaz; their very definite strengths and weaknesses and how very funny they both are. As usual, Nancy Meyer delivers in this area. The guys are wonderful; Jude Law is so very English and Jack Black, whom I adore anyway is perfectly sweet and funny. Then there is the unexpected treat of Eli Wallach’s character and Hans Zimmer’s music. This movie is chocolate for the soul! One of the best parts is that a guy could enjoy this too as having a Y chromosome does not interfere with the entertainment factor.

This Christmas these two got the job done, so I did not get around to watching ‘Miracle on 34th Street ‘ or ‘Scrooged‘ but I love them as well. So I finally got into the Christmas spirit with the help of some animation and acting.

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Christmas Alone

Christmas Alone - ME/CFS

This is my very first Christmas alone. The common idea of Christmas is one of families getting together, of spending time with loved ones, not of being alone. But for whatever reason, there are plenty of people that spend Christmas alone. I actually chose not to attend the family gathering this year, and at the time that I made that decision, I was really happy about it. I believe my exact words were “After 36yrs, I deserve a Christmas off”.

However, as I sit here late on Christmas Eve writing this, I do miss the fact that I won’t have my family around me this Christmas. They’re crazy and the ensuing family dramas are way too much for my fragile health this year; I know all that, but it doesn’t change the longing for Christmas.

I’m an Atheist, so Christmas does not have any religious meaning for me, but I love it anyway. I love the way everyone makes time in their crazy schedules and busy lifestyles to get together, all the food and drink that is shared, even the hubbub in the weeks leading up to Christmas and then the silence as everyone takes Christmas off. But this year there is none of that, and it is affecting me more than I thought it would. Maybe we’re just all conditioned to want a Thomas Kinkade Christmas, which is why we rush around and spend so much. We’ll never achieve it, but when we don’t even try, like me this year, it does feel horrid.

I guess I should stop the whining; after all, I chose to be alone. There are those that have no choice. Perhaps they have no family, or there are those that are too ill to even leave their beds to spend time with family. Some with severe ME cannot even bear to have someone in the room with them; surely that kind of Christmas is worse.

So, to all those who happen to be alone this year, Merry Christmas to you, and no matter how you spend the day; pretending it’s not Christmas, or celebrating alone, watching your favourite Chritsmas movies, or distracting yourself with something else, I wish you a wonderful day.

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A New Lesson in Loneliness For a ME Sufferer

A New Lesson in Loneliness for a ME Sufferer

My partner left to spend Christmas with his parents as he usually does, but for some reason this year it has left me feeling extremely lonely. My health has not been the best this year, with many relapses hampering my efforts to get my energy levels up and to keep my symptoms at bay, and more than just physically being alone, I’m sure it is the isolation of ME that is causing me to feel so down.

I initially became ill in 2001, and by 2003 I was so ill I had to leave work. For the next 7yrs I was mostly housebound and even bedbound at times. But after working on getting a set routine, balancing effort with rest, finding some meds that helped with symptoms and a diet that also helped, I started to get better. I met a lovely Italian, moved in with him, got a job, but over did it and relapsed in a bad way.

So 2012 has very much been a year of trying to claw back some health. I seem to rarely go out again, and the only person I spend time with is the person I live with. So yesterday after he left, I felt so sad and lonely. I’ve been thinking about why, and I realise it is because my whole life has become caught up in him and this little life. He is wonderful, but the fact is that I have become extremely isolated from ‘normal’ life; too isolated.

I never thought this illness would be able to make me feel this loneliness again, but it has. At first I was shocked when I fully acknowledged what my life has become, but it has also made me more adamant that it won’t always be like this. It’s made me worry that I’m putting too much pressure on my partner to be everything to me, but that is something I can change. I thought 11yrs of ME had kicked my butt every way that it could be kicked, but there are still new lessons to learn and battles to fight.

This new lesson in loneliness is showing me that there are still so many ways ME/CFS can and does affect my life, but I know I can handle it, the only problem is that I don’t always recognise it. Before this latest relapse, when I first became ill, I recognised ME for the foe that it was. I think this time I’ve become too complacent; I don’t give the illness it’s dues which is bad because it means I don’t always see what’s happening. I often behave like I had ME so times like this weekend remind me that I have ME which is hard to admit, but good to know.

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