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!!

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Bits of Silver

Posted in Long-Term Illness, My Thoughts, Wedding with tags , on October 30, 2009 by Sam Sadie

This past week has been a real shocker. My energy levels have plummeted through the floor, and it has taken all my energy to just make it to the bathroom and back. It feels as though my body has decided that it’s had enough of this world, and has left for brighter parts of the galaxy, trailing my optimism behind. All that is left is a gaping black void where my body once lay… Pish posh – I mustn’t let myself get too comfortable in that spiral of self-pity. It’s a deep pit that is a real job to get back out of. I know this. And yet…

I did manage to scrape together some little energy yesterday, and finish my wedding website – that I started about 4 month ago. It shouldn’t have taken that long, but with this unpredictable illness, even the simplest of tasks can become Herculean. My website is a case-in-point. It is made up of a really simple to use template, and you just add in all the details about your wedding, etc. Old Me would have had it done in 2 days…3 at the most. New Me celebrates when it is finally completed 4 months down the line – at least it was finished before the invites are sent out! Hmm..I need to find more of those – Bits of Silver – the silver lining to every dark cloud. Perhaps that’ll help me stay optimistic even during the darker days. Right, Bits of Silver it is then…

I need to end here, as my arms are getting tired of typing already. New Me, over and out.

Frustrated, But Forgiven

Posted in Long-Term Illness, My Thoughts with tags , , , , , , on October 23, 2009 by Sam Sadie

Today has been a pretty low day, energy-wise. I have been flat on my back in bed, grateful for my new gadet…my brand spanking new iPod Touch. As I said the other day, my connection to the internet is my life-line on days like today. And I have struggled to get my laptop to connect,  wirelessly, or via the LAN cable!! Aargh! My darling husband even moved the broadband router next to my bed, but that hasn’t seemed to help much! I have wanted to get on here and write, and have been foiled in my attempts…until now! I can access my blog from my iPod, but I’m not very proficient at typing on the touch screen yet, so after a short-lived (failed) attempt to blog from there, I gave up. It just took too much concentration and energy, so I felt it was being counter-productive!

Never mind. I’m on here now, so all the frustration is past…for the most part anyway.

I smile to myself when I realise how my illness really does colour my whole life. How do you know that you’re going through a relapse? When all the things you’re looking forward to are assistive devices and aids. I finally swallowed my pride (some of it anyway) and agreed to let my husband refer me to our local wheelchair service. I usually borrow wheelchairs at museums and such, but have resisted having one of my very own. In my mind, it felt like it would be admitting a small defeat. My husband (who is a physiotherapist by profession) finally made me see that my stubborn refusal to accept a wheelchair, meant that I was making MYSELF a prisoner in my home. It meant that we could only visit places that loaned wheelchairs, and meant that I couldn’t even get out in our little village for a change of scene. I can see now that he is totally right. What a tot I am!

Another thing I’m waiting to have delivered is my bathboard. We have an over-bath shower, and I’m really struggling to use it as I get tired standing too long. And don’t even let me get started on the issue of washing my hair…!!! So I finally contacted our local community Occupational Therapy service and asked them to issue me with a bathboard. Another bit of pride swallowed around that lump in my throat.

I turn 30 at the beginning of December, so Chris asked me what I would like for my birthday and for Christmas. And the two things at the top of my Wish List are things that will make my life easier on the days (and weeks) when I’m stuck in bed. Below are the links for the two products, if anyone is interested in checking them out. Oh well, some people may think I’m sad, but I just know that anything that helps me keep sane, and stay connected to my virtual-world, can’t be all bad. Here’s to the glass being half full!

Laptop Laid Back

All-in-one TV/DVD/iPod DOcking Station

Oh, and while we’re on the subject of Wish Lists… If you’re anything like me, and do most things online (like gift shopping), I’ve been using this awesome site to manage my Wedding Registry, as well as both Chris and my Wish Lists for birthdays, Christmas, etc. It is called TheGiftListCompany.

The other night I had my first dream in which I had CFS/ME. Usually when I dream, I’m myself pre-CFS/ME. Or, at least, I’m not limited by any fatigue.  It really threw me the next morning when I remembered the dream, because it was so out-of-the-blue! I’m still not sure what to make of it actually. It has left me wondering if it is a new step in the acceptance of my condition – that I have accepted it on a deeper, sub-conscious level than I have before. And, if that is the case, I’m not entirely convinced that I’m pleased about it. Of course I know I have a debilitating, unpredictable condition, but isn’t it our fight against our circumstances that keeps hope alive? It’s probably a double-edged sword I suppose…acceptance means that we engage in actions that prevent us from aggravating our symptoms, yet refusal to accept the reality keeps us believing that we’ll be that person who suddenly gets better and returns to their old lives. Anyone have any thoughts on that? Am I just totally over-thinking things? Letting one dream get me in a flap for no reason? Hmmmm….they do say that an idle mind is the devil’s playground…

Well, enough for today. I need to save some energy for when my husband gets home. Too often he comes home to the shadow of my former self, and I need to make more of an effort on occasions. Starting now.

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.

Down on Day One

Posted in Dealing with Death, Introducing New Event, Long-Term Illness with tags , , on October 18, 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…