Archive for Friends

Overwhelmed…In The Best Possible Way

Posted in Long-Term Illness, My Thoughts with tags , on February 23, 2012 by Sam Sadie

This post has been inspired by all the amazing support that I have received over the past day…

I have always been quite reserved about sharing my blog with people, and have largely relied on them “stumbling” upon it by accident, and then deciding to stay because they identified with what I have to say. It, somehow, seemed easier to share the often brutal reality of my life with strangers. Strangers are less personally invested in my happiness by the very virtue of not knowing me, whereas friends and family feel guilty when they cannot “fix” things for me. They take my honest expression of the struggles and frustrations personally – as though it is somehow their fault that my life is what it is. And I’ve never wanted to hand them that burden. I’ve presented my “happy face” to the world, and only allowed them glimpses of myself. Carefully thought out words and phrases on status updates and forum posts. I presented the “me” that I thought the world could deal with most easily.

On the 14th February 2012, my husband and I became British citizens. It’s been a long and arduous process to get to that point (not to mention hugely expensive), and we were so excited about it all. In fact, I was so excited that as soon as the Citizenship Ceremony was over, I posted photos of the two of us holding our certificates on Facebook, Twitter and BlackBerry Messenger.

At our Citizenship Ceremony

And then the questions started. I hadn’t really considered that the picture of me in my wheelchair would cause so much interest. But it did. Some people were simply curious, while others were shocked or devastated. I suddenly received messages and emails, and even my mother was quietly asked what was wrong with me. It was as though my carelessly posted pictures suddenly drew back the curtain, and allowed everyone a glimpse of the reality that I’d worked so hard to hide. I was more surprised than anyone at the responses I received. And it was wonderful. An out-pouring of goodwill from those I had kept at arm’s length for so long.

And, in that moment, I decided to share my blog with my friends and family. I realised that they were strong and gracious enough to deal with all the messy emotions that my illness spills out of me. I posted a link to my blog on Facebook (it was such a scary thing to do), and invited the world inside my head. Invited them to see me for who I really am, and judge me for it. Without question, it’s one of the best things I have ever done. The response has been more emotional than I could have imagined, for both myself and them. I’ve cried more happy tears in the last 24 hours than I have in a very long time. I touched their lives, and they in turn touched mine. Tentatively. Beautifully. And with such honesty.

I’m glowing inside.

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Crashed!

Posted in Introducing New Event, Long-Term Illness, My Thoughts with tags , , , on November 4, 2009 by Sam Sadie

My severe symptoms are persisting. I rounded up some stray energy yesterday and managed to wash my hair (a real achievement for me these days), and decided since I was feeling all sparkly clean, I’d join my husband on a quick trip to the local supermarket. How daring! He hired a wheelchair there for me, and pushed me around…and about 10mins into the expedition, I was so exhausted, and my nerves so frayed, that I just begged him to take me home.  It was all just too much for me. It frustrates me that two simple (and supported – I used a bathboard to shower and the wheelchair at the shops) activities have so totally wasted me. I spent all day today just recovering…and even now I’m feeling shattered. I know that it’s all my fault though. In this crash, I should have known that washing my hair AND going to the shops was pushing the envelope a bit, but I was lured into the trap by my sense of being so clean and fresh. Washing my hair always gives me a sense of well-being and makes me feel so positive…I just have to be more disciplined, and not forget about pacing during that heady time.

I have been back in touch with our local ME/CFS Specialist Clinic, and I’m thrilled that they can see me on the 18th of this month! I just feel that I need to have everything reviewed. I still don’t have refreshing sleep, and I am experiencing new symptoms since this relapse began. I suppose I just want to feel that I’m trying something/anything to improve the situation. It’s my Type-A Personality, I suspect, rearing its head. I like to feel in control of things, and I feel like I’m floundering in a sea of chaos. Nothing feels like it should, and I feel as though my body has jumped ship. A case in point for my feeling of loss of control happened the other evening. My husband slaved over the stove making our dinner, and made mashed potato that had sweet potato mixed in. I hate sweet potato, and he knows it. I’m relatively un-fussy with regards to food, but there are about 3 veggies I don’t eat. He decided that I needed to increase the variety of vegetables I ate…”because it’s good for me”. Well, I just burst into tears. There is so little in my life that I can control, and here he was trying to remove the control I had over what I put in my mouth… I was hysterical. In his favour, he was so apologetic when I finally calmed down enough to explain the outburst to him, and he went downstairs and made me something new from scratch! I love him so much.

The past few days I have thought quite seriously about work. I am currently off sick (I have been since the end of July), and I know that I was totally unrealistic trying to work 30hrs a week with my ME/CFS. I was definitely not applying the principles of pacing at all. I came home exhausted every day, and on my bad days, I just couldn’t make it through the day. I was convinced that I had made a reasonable adjustment to my working week by dropping my Wednesday, and thereby only working two days together at a time. How I deluded myself! I wasn’t coping, I was hanging on by my fingertips…barely! I was pushing myself just to get through the day. I have been thinking about all this, and have realised that I definitely can’t go back to work the way things were. However, if this is the case…I’m not sure whether my employer will accept me on fewer hours. I’m fairly sure they won’t. Even if they do, they expect me in at specific times and for a specific duration, and this doesn’t allow for my crashes after a virus, or just out-of-the-blue bad days! I can’t afford not to work, as at present I am not a permanent resident in the UK (hopefully I’ll be granted permanent residency in January), and therefore am not eligible for any sickness or disability benefits. And as homeowners, we can’t really afford our mortgage and bills on just Chris’ salary.

So, I’m hoping that someone out there will have some good ideas for me! Ideally I’d like to work from home, possibly with the computer, and where I can pace myself as needed. I’ve considered starting a cake-decorating business, but don’t really know how to go about it. A lot of the work can be done sitting down, and I enjoy being creative. Also, I’ve chatted about this with my friend, Claire, who is busy doing a child-minding course. She has suggested we open a child-minding business together, with her doing the running around, and me doing the more sedentary and craft activities. It sounds good, but I worry that I won’t be able to just “crash” when my body has had enough. I also worry about all the viruses and bugs that kiddies can carry, and am concerned that I may end up constantly ill. Hmmm….there obviously is a lot to think about… Any suggestions or comments will be gratefully welcomed!!

Things I Wish People Knew About My Illness

Posted in Long-Term Illness with tags , on October 20, 2009 by Sam Sadie

As I’m new to this whole blogging thing, I’ve been looking into other blogs related to CFS/ME. I’ve just found one here on WordPress (http://silverwingssong.wordpress.com/) that had a post that really inspired me to write my own, similar one.

  1. Just because I look “healthy” doesn’t mean that my condition isn’t real. Mine is an invisible illness. I’m not being lazy! The fatigue is REAL. And it is pervading. It affects every aspect of my life  – from brushing my teeth, to participating in work. Do you think I want to admit that simple things are a challenge?
  2. I have tried to hide how exhausted I am – in fact, I’ve mastered the art. So, if I look tired, I am really tired! And I hate that you can see it.
  3. I’m sorry that I sometimes snap at you, or seem short-tempered. Losing my sense of control over my life is frustrating, being tired all the time is frustrating, fumbling for words is frustrating… When I’m frustrated I snap. But know that I always feel bad about it.
  4. Be patient with me. I struggle to express myself verbally. My illness has turned my brain to mush, and I’m having trouble accessing my old “filing systems”. It frustrates me even more than it might frustrate you.
  5. To my employer, I’d like to say thank you for your understanding when I first was diagnosed. Please continue to support me. I know that I need more time off sick than other employees, but I genuinely can’t help it. Working formed part of my identity – no longer being able to work full-time has dented my confidence significantly. Like everyone else, I want to feel that I contribute to my family’s finances… I hate that we are less financially secure than we were before my illness.
  6. I feel guilty all the time. It’s a reality of my life, so no additional guilt-trips required, thank you. I feel guilty that I can no longer contribute as much financially as I used to, that I can’t cook or do housework in the way that I did before, and that I avoid some social situations I used to enjoy. I don’t need you to remind me of the things I can no longer do – believe me…I KNOW!!
  7. Forgive me if I send my apologies for a social engagement. I don’t always have the energy. They require much more energy from me than you sometimes realise…more energy than I often possess.
  8. I don’t enjoy being wheeled around in a wheelchair – particularly when I get stared at as I stand up from the chair! Not everyone who needs to use a wheelchair has no use of their legs. I agree to use the wheelchair only because I want to be able to get out in the community and try live a little of my former life.
  9. I feel like crying when I see people in their 70’s and 80’s doing things with ease, that I can no longer do. It frustrates me, it saddens me, and it knocks my self-esteem. Perhaps it shouldn’t, but it does.
  10. I am allowed to occasionally be sad… You would be too if you had to re-think your whole life.  I miss my old life, and am allowed to grieve over its loss now and then.
  11. I need different things from you at different times, and I can’t always ask you for it. I still struggle with my pride. If I do ask, know that it has cost me something to say. And accept that I genuinely need it.
  12. Regardless of whether I’m having a good or bad day, I need your support and understanding. I truly cherish the friends and family in my life who do just that.

Living Online

Posted in Long-Term Illness with tags , , , on October 19, 2009 by Sam Sadie

As I am often unable to leave the house (or even leave my room on particularly bad days), I have resorted to joining online communities. I am fortunate, as my M.E. hasn’t affected my ability to read and process information, to the extent that it has affected other people. I need to take breaks, but I can read a chapter of a book without it affecting my energy levels too badly. I do struggle with word finding (quite significantly at times), and this way of interacting with people via the internet, is less anxiety-provoking than face-to-face conversation, as I have time to construct my thoughts into meaningful sentences, and organising those sentences into (hopefully) coherent ideas.

My illness has turned me into quite the recluse, and the last time I participated in a social engagement, was my Registry Wedding and the “Reception” that followed at our house. That was on the 29th August 2009. And that was just over 7 weeks ago. I see my husband daily, and our close friends (a couple) at least monthly. Other than that, I don’t exist in the outside world. Not in the conventional sense anyway. I don’t work at present (I’m booked off on long-term sick leave), I don’t do grocery shopping, I don’t even see my neighbours for weeks at a time. I’m a non-entity. A concept. An idea. Everyone KNOWS I exist, but they don’t see tangible proof of that for months on end.

There is somewhere I DO exist. Where people see me, notice that I’m around, and more importantly, notice when I’m not. I exist on Facebook, on Twitter, on Bride’s Diary…and now on here. I exist as a username, an avatar, a photo. I’m still a concept, but I’m a concept with substance.  I’m not sure whether this fact is sad or amazing. Even 10 years ago, people like me would have had no opportunity at a social life, albeit an artificial one. They were completely isolated. I am so grateful that fate chose to hand me this illness in a time when social networking has shifted to the internet. It has allowed me to maintain contacts, form new friendships, and feel that my life has impacted on others. That my existence has touched the lives of others – hopefully in a positive way. Without these ties, I know that I wouldn’t have coped with this current relapse of my symptoms. I would have shrunk even further inside of myself. I am less confident in social situations than I used to be.  I worry that my word-finding difficulties will make me seem stupid, or that the energy it takes to seem bubbly and sociable will be all too much for me. The internet has left me with a sense of confidence in my abilities. A remainder of self-belief.

And I am grateful.