Archive for the Introducing New Event Category

Been Too Daunted To Post (part 1)

Posted in Introducing New Event, Long-Term Illness, My Thoughts, Pregnancy with tags , on February 22, 2012 by Sam Sadie

Well, it’s been about 2 years since I last posted to my blog, and it is simply because every time I decide to write something, I realise just how much has happened in the interim period…and I get cold feet. I know that I probably should have just started writing and seen where it ended, but I just couldn’t get past the “big picture” of what I wanted to cover…

When I last posted on here, I was still in the first trimester of my pregnancy, and not feeling too well. I’m pleased to say that things improved dramatically once I hit my second trimester – which my ME/CFS Specialist had predicted, but which I’d slightly doubted happening. Actually, I’d seriously doubted it, in truth. I’d been bed-bound for such a large proportion of the time during the early days of the pregnancy (and before)- that I just couldn’t imagine a time when I’d be anything less than totally exhausted all the time…

The energy increase and mental “clearing” came so quickly that it was difficult not to anticipate the “crash” that I expected to follow. But it didn’t! It’s hard to explain, except to offer a description of what I could suddenly do: within the space of 3 weeks, I had met with my manager at work, negotiated “medical re-deployment” (changed my role to one that is less physically demanding) and reduced my hours to something more sustainable, and had started in my new job! I spent 3 months gradually increasing my hours from a starting point of 6 hours per week, up to 20 hours per week. And in the 4 months until my maternity leave started, I had only ONE DAY off sick!! Completely unheard of since my ME/CFS started over 4 and a half years ago now…

My pregnancy went by more smoothly than I’d anticipated (is this anticipation of complications in all areas of life, a result of how deeply my illness has pervaded my psyche? I would have to say, probably…). I was regularly seen by a consultant at our local hospital, and he was a truly amazing doctor. He realised that he had limited experience of obstetrics where ME/CFS is a factor, so he sought repeated advice from my GP, my ME/CFS specialist and the head of the anaesthetics department. I saw him every 4 weeks from my second trimester onwards, and he approached all my birthing concerns with such open-minded candour that I could have kissed him at every appointment (I didn’t however, as I didn’t think the “pregnancy hormones” excuse would suffice).

I originally agreed to try for a vaginal birth, with an epidural as soon as I was in established labour. I was extremely worried about whether my energy levels would hold out after the birth, or whether I’d crash completely, never to recover again (my husband accuses me of “catastrophic thinking” at times, and on this occasion he was probably justified). But I was set on having my baby through a normal vaginal delivery. As fate would have it, in the month before I was due to give birth, the TV programme “One Born Every Minute” aired on UK television. It’s a reality show that is filmed in a busy maternity unit, and shows 2-3 births every week. After watching an episode where a woman was in “early labour” (only 2cm dilated with irregular, though painful contractions) for 3 days, my husband turned to me and asked whether I would consider having our son by elective c-section. I had never considered that early labour could last as long as that, and that it would be as draining as it clearly was for the woman we saw on the show. Our contingency plan with the obstetrician had been for an epidural once I was in established labour…but what if I was so exhausted from early labour that I’d be too tired to push, and need a c-section anyway?! So, at our appointment the following week, we highlighted our concerns and asked about the possibility of an elective c-section.

The consultant agreed to the c-section as there was no way to tell which option would be the “right” choice for me, so he was willing to be guided by my wishes. My elective c-section was a wonderful, relaxed experience and went as smoothly as expected. My energy levels never even dipped for a moment, and I was walking around the ward 24 hours later with my beautiful son, Ethan, in my arms.

I enjoyed my maternity leave, going out and about with Ethan 2 or 3 times a week. I coped well with him on my own, and as my energy levels remained so well, I even allowed myself to hope that I might not crash again – that my pregnancy had “cured” me. Despite everything that I know about my condition, I dared to dream. And then that dream was shattered, as so many of my dreams have been shattered by the ME/CFS monster.

I had decided to take only 6 months of maternity leave, so at 5 months old, we started Ethan on some “settling in” sessions at the local nursery. Leaving him there, even for 2 hours, initially, was far tougher on me than on him. He settled beautifully, and was always so content when I arrived to pick him up. But, as any parent knows, when starting at nursery/school for the first time, our child’s immune system comes under attack from every virus known to man. Ethan was no different. And being the sweet child that he is, he willingly shared them all with me. I was constantly sick. Just as I was recovering from one virus, the next one struck me down. I even missed my official start day at work as I was so unwell. The constant barrage of viruses finally resulted in a major relapse of my symptoms, and 12 months later, I’ve still not recovered.

I managed to start back at work, but wasn’t able to do very much when there. My fatigue was unpredictable, and my brain fog was constant. I could probably count the number of days I worked in the first 6 weeks after my maternity leave ended on one hand. And, in early March 2011, I finally listened to my body, and went off on long-term sick leave. I felt so defeated (even cheated) that I’d been so well for so long, only to be jolted back to reality with a bump. No, an earth-shattering, soul-destroying thwack! Oh, reality, how merciless you can be.

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!

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!!

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…