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I’m Back!!

Posted in Introducing New Event, Long-Term Illness, My Thoughts, Pregnancy with tags , , , on January 6, 2010 by Sam Sadie

It’s been a while since I last posted, and it feels good to be back! The long break was intentional, as I didn’t want to blog about my news until I was out of the woods (so to speak), and it affected every part of my life, so didn’t have much unrelated stuff to talk about… Never mind, here I am now…

As you may have guessed from the last paragraph (if you’re anywhere near as perceptive as a cousin of mine)…I’m PREGNANT!!! And I’m both thrilled and terrified! Chris and I had decided that we wanted to start trying for a family, and I was so surprised that we fell pregnant within about a month of starting! I actually did the first pregnancy test while Chris was at work, as I was convinced that I was just having a hormonal blip… I was stunned when it came back positive!!! I must have stood staring at the test result for about 5 minutes before it actually sunk in. Then I spent the next few minutes reading and re-reading the test insert to confirm that 2 pink lines did, in fact, mean that I was pregnant! Then it was pandemonium in my head. Yay, I’m pregnant…holy crap, I’m pregnant…what was I thinking?…I can do this…how on earth can I do this?…I’m going to have to push a whole baby out my wazoo…wait, let me read that insert just one more time…

I started my “morning sickness” (must be a man who coined that phrase!) two days before I found out that I was up the duff, but had put it down to un-wise breakfast choices (surely eating chocolate cake for breakfast causes nausea?!). The nausea then arrived with a vengeance, and I seemed to live solely on Marmite toast, bananas and satsumas. The toilet and I became almost inseparable friends. And my poor husband had to deal with my newly hypersensitive sense of smell… He bore it like a trooper. I couldn’t stomach any cooking smells whatsoever (though garlic and fish were by far my biggest aversions) and he was banished from my vicinity until the smells had stopped clinging to his clothes. It was so bad that even the smell of boiling pasta (essentially just hot salty water) made my stomach turn! Luckily, the nausea has mostly settled now. I can deal with the odd bit of sickness without too much fuss.

My first trimester also saw my fatigue symptoms worsen, although I was expecting that to be the case. There were days when an 11am nap just couldn’t be avoided. My ME/CFS specialist kept re-iterating at my last appointment, that good sleep hygiene meant NOT sleeping in the day… I just inwardly rolled my eyes, and thought that it was perhaps not such practical advice coming from a MAN – what would he know about being so tired that I wanted to scratch m eyes out! He did encourage me by saying that in his experience, the second trimester usually means significantly improved energy levels in women with ME/CFS. Here’s hoping!

I’ve had a few comments about the timing of the pregnancy, with my symptoms being as bad as they are. I’ve tried to ignore these as far as possible, as Chris and I DID discuss the implications of pregnancy and a baby BEFORE we started trying! Give us a little credit folks! We came to the conclusion that if we waited for a “better” time, we might never start a family… My ME/CFS can be so unpredictable, that who knows what it would be like in 9 months time… I have realised that we’re just going to have to take things one day at a time, and make things up as we go along when baby arrives…none of the “what to do with a new baby” books are written with ME/CFS parents in mind, so we’ll have to figure things out as we go along. Of course I have moments of panic when I think about having to cope with a baby (and then an active toddler!) on my own during the day while Chris is at work. I’d be delusional if I didn’t worry about it. But I’ve discovered a ME/CFS Parents Message Board online, and it’s brilliant to get in touch with other women who are pregnant and have ME/CFS (or have had kids while suffering from ME/CFS)… It’s helped me to feel less alone in this forray into the unknown! Once again, thank goodness for the internet!

I can only imagine that my ME/CFS (and the resultant inactivity) has turned my abdominal muscles to jelly. I will be 14 weeks along tomorrow, and I already have a belly, despite this being my first pregnancy. I’m now fully into maternity clothes, as nothing else fits anymore, besides my track pant and baggy t-shirts! I’ve resigned myself to the fact that I’ll be huge by full-term…

I had a bit of a scare the night before last, as I started bleeding, with small clots being passed yesterday morning. I called the out-of-hours GP service and was booked in for an emergency scan/check-up yesterday at the local early pregnancy clinic. I was so worried that there was something wrong, but luckily the scan showed Little Bean waving, kicking and squirming, totally oblivious to panic on my part! I was told it was probably bleeding from my cervix, and as I’ve never gone through this before, I’ll take their word for it!

Anyway, I’ll call it a day here, but I’ll be back blogging again soon…now that I can share my pregnancy with the world at large!

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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!!

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.

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.