2014: The year of good friends

Just a quick post today, on this the last day of 2014, or it was when I started this post, and it's now the first day of the new year. I hope that you all enjoyed the holidays and wish you all the best for the New Year. 

If I could sum up this year in one word it would have to be 'friendship'. Okay that's not a descriptive word but it's one that encapsulates my year as a whole. When I look back on 2014 it is with happiness that I have come to be friends with some truly lovely people; who I feel honoured to call my friends. 

On New Years Eve 2013 I decided to let go of a 'friendship' that was dragging me down. In fact it was making me more ill. Part of me was scared as I had been used to turning to these people for comfort. They were probably my closest friends. However I soon realised their friendship actually more than anything made me feel needed. That actually it was me who was putting in all the effort and always to be there when they had problems. And of course being chronically ill you're limited enough as it is. I think my logic was 'if these people who I do a lot for do not treat me as friends should then what hope is there?' So in a way although I knew they weren't good for me I still felt scared to let them go.

Well turns out a lot of hope. By the time I was coming to this decision I had already began to get to know people in the online chronic illness community. Talking regularly to some of them; and not just about our illness either. Here were people that despite having plenty on their own plate would also take time for you too. To ask how you were. To cheer you on when you achieved something. People that understood that getting downstairs or having a shower were big achievements not mundane 'well I do that every day... what are you so excited about?' things. I'd even received cards and little gifts, which I found so increcibley thoughtful.

 

Of course you're not going to get on with everyone you come across, whether they have the same illness or not. That's just a fact of life. You won't share the same interests, same sense of humour. You might just simply clash. 

However this year the friendships I have made that I know are completely genuine and have come to treasure has been the most welcome gift. I know I'm never truly alone. I know people will be there for me when I need them and will celebrate with me when I achieve something. My wall is covered in cards. My hands ached from writing many christmas cards. And I feel truly blessed.

And in return I do my best by them, listen when they need to talk, offer them support when times are tough, celebrate their achievements and feel proud of them, and make them laugh. These friendships are no less real because of where you met. 

When I looked through my memory jar, which I will do a post on very soon, a lot of the memories involved these friendships. Many of us became closer when we teamed up to raise money for charity for ME awareness day. Together we raised over £4000, which considering we raised that from our sick beds felt like even more of an achievement. Another was getting to meet one of the friends

I've made online. It felt as though we had been friends for years. Certainly not like we were meeting for the first time.

Hopefully we'll have the chance to meet up more in the new year and share plenty more laughs. I hope to meet some others too, health allowing.  

 

Sadly two of my online friends passed away last year and although I had not met either of them their passing still really upset me, as it did many others. Regardless of whether we had met or not, we still spoke as often as we could; cheered eachother on, offered support. Exactly like any other friendship; only our circumsatances meant that we did most of our socialsing online. I have spoken more about this in this post. And I feel thankful that I got to know them.

So here's to all the people that have made 2014 a brighter place. Who have supported me through the rough times, cheered with me when I managed to leave the house and given me some good giggles. 

 

Sian

 

When strangers become friends

I have been wanting to do a post about this topic for a while and have recently thought about posting it as part of my upcoming blogaversary. However on Monday many of us in the spoonie/chronic illness community online were left devastated by the news that a very dear friend had passed away. Non of us had ever met her in person but her influence on us was still profound. It may seem strange to be so deeply affected by the passing of a relative stranger but in the end she wasn't a stranger she had become a friend and a great support.

Irene, was one of the first people I spoke to in the online chronic illness community. It was not long after I started writing my blog and discovering similar blogs, one of which Irene wrote (laughing from my sickbed). She soon became an inspiration to me, having suffered with ME for 38 years and yet she was always in good humour and offering support to others in similar situations. She encouraged me to write my story through my blog, to be brave and tell the world all about this awful illness.

Soon enough though, we started talking about more everyday things, such as television series, learning languages (she was impressed with my attempts to learn Greek) and reading. She was a keen reader, full of recommendations. Even as simple as asking how are you? Good morning/ Good night. Did you sleep well? Simple conversations but when you are often cut off from society through illness hearing these words can make a big difference. A little piece of normality.

Irene said that she was incredibley grateful for the invention of social media as it gave her a social life of sorts again. You may not be able to work, leave the house often, some may only see their carers. However by simply logging on to social media the world becomes that little bit smaller and less lonely. You realise that you are not the only one in that situation, and although that saddens you it also comforts you; that there are people who fully understand what you're going through. That you do not need to explain yourself to and will treat as much more as a normal person than that person with an illness.

Of course we do acknowledge our illnesses because we know that we don't need to censor ourselves with other sufferers. They will not define us as whingers or moaners or 'constanly talking about being ill.' Because sadly they get it. They know that we probably do come across as though all we talk about is being ill, but the difference is we are constanly ill. We're not being hypercondriacts or seeking attention. The moments and I do mean moments, that we are not hyper aware of our illness from the vast array of symptoms vying for our attention are few and far between.

This is why having those 'normal' conversations can make all the difference. Yes, they may be through social media and with people we have never met in person and perhaps won't ever meet in person, but they're an essential part of keeping our mental health in check. Making us feel less alone and forgotten about.

I have a great group of friends now through social media, mostly on Twitter. We talk practically everyday, again asking those everyday questions. When one of us is having a particularly bad day the immediate support and comfort is so heart warming. Likewise, if we're having a good day; everyone is genuinely made up for that person. Nowhere else will you get as much support and cheers for saying "today I managed to get downstairs" or "today, I washed my own hair."  Things that sound so small and not at all in the realms of 'normal' success or achievement but can be huge milestones for someone with a chronic illness.

If one of us is quiet, not as active on social media as usual it's heartening to see messages of concern or a simple "I hope you're okay."  And okay meaning no worse than usual, not run of the mill okay.

One of the nicest things I've experienced is getting things in the post from my online friends. Little gifts that will make your day, especially if you've beem feeling worse than usual. It's so beautiful to know that although they have limited spoons which are used just to get them through the day, that they have used some of that precious energy to help you. Honestly, the people I have met are so selfless, even though they really need to be, to take care of themselves. Especially when they have taken time and effort to make you something. It makes the gesture all the more special. I have recieved some beautiful handmade jewellery and even some homemade chocolate spoons.

Again, I believe it all comes from that deeper level of understanding. You know just how rubbish you're feeling so can fully relate to others with the same condition. And if they're worse than usual or develop another illness/symptom you are fully sympathetic.

Most importantly, we make eachother laugh. Laughter can be such good medicine. Often we make jokes of ourselves. Things like "I've done so many push ups this morning. It took me 20 just to sit up." Being able to laugh at ourselves can be a good coping stratergy. Sharing a joke and a laugh is just so important for moralle and it amazes me that despite all the rubbish of chronic illness people can still laugh. It shows great strength.

Social media has definitely made the world a smaller place and although I can fully understand the negative associations; the living your life through a screen, the idea of presenting an unrealistic version of yourself and the one I find a particular bugbear: "posting about your life instead of living it."  Do you know what I mean? The status updates about "I'm having the best time," when you're thinking "well, if you're really having the time of your life why are you posting about it, rather than LIVING it." I think maybe that's an annoyance that has grown stronger with being chronically ill. That if you could be out there "living" more, you would soak it all up.

So this post is dedicated to all my online friends, my spoonie Brothers and Sisters that brighten my days and inspire me with their kindness and empathy in the face of their own difficulties. Apologies it's turned into rather a long post but honestly there are not enough words to describe these people.

If Irene taught me anything it was the value of friendship and I will honour that by being a good friend and continue to support others on their journeys.

Thank you Irene. Thank you to all my online friends.

Sian x

If any of you knew Irene @upasbook and would like to honour her I have set up an in memory fund for the charity her family expressed in her obituary CFIDS Associstion of America. You can view it here