Archive for M.E.

Things I Wish People Knew About My Illness

Posted in Long-Term Illness with tags , on 20/10/2009 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 19/10/2009 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.

Down on Day One

Posted in Dealing with Death, Introducing New Event, Long-Term Illness with tags , , on 18/10/2009 by Sam Sadie

As a blog virgin, here I go…

I start this blog two and a half months into this, my second relapse since my M.E. started in June 2007. I have averaged at least one relapse per year, and in fact, I only had 6 months in between my 2008 and 2009 relapses… The limited periods of better days is starting to wear on my optimism. It’s hard to stay positive when you’re almost constantly clawing at a sense of normality – hoping for better days, more energy and better sleep. But that is the reality of my life. In 2008 I decided to use my energy to accomodate to my “new normal”, but it is a resolution that still challenges me, and I dare say, still eludes me for the most part. I have accepted that I have a long-term condition, and I know as much about my M.E. as it is possible to find online. What I haven’t totally accepted is the huge impact that it has on my everyday life. I had an idea of who I was, what I was capable of achieving, where I was heading in life, both personally and professionally. I was an overachiever, a “yes-(wo)man”…the classic type-A personality. I had a sense of control over my life, and on the 3rd June 2007 I lost that. Totally and completely. And that I haven’t come to terms with yet. The loss of control, and the fact that I have to change almost everything I knew about myself…that’s hard. It feels like a total loss of identity. I’ve had to re-discover myself.

My M.E. and the first relapse (in 2008) were both triggered by viral infections, but this current relapse has most likely been caused by stress. And not just average stress, but rather, the world-view altering murder of my father in May 2009. I have bottled up my emotions about this event, and it has had a devastating effect on my health. I am actually worse (symptom-wise) than I have EVER been. Some days I am confined to the upstairs floor of my house. I have enrolled with a bereavement counselling charity, but am still on the waiting list for a counsellor. My dear husband (bless him) has started trying to get me to talk about my dad’s death, but I just can’t release the flood-gates…I’m terrified of being totally overwhelmed and possibly going into respiratory arrest. Every time I pick at the scab, I get so emotional that I feel like my chest is being constricted and I can’t breathe. So hopefully, by using this blog as a platform to re-gain a sense of control over my life, I might also start coming to terms with the loss of my father.

This first post is definitely not a “hugs and puppies” post, but rather to give an idea of where I am in my life and in my head. I hope to be more chipper next time round…