Archive for February, 2012

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.

Advertisements

Been Too Daunted To Post (part 2)

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

We had originally planned to put Ethan in nursery 3 days a week, from 8:30am – 2:30pm. I was going to have every Wednesday off work, and my husband would work flexibly so as to stay home every Friday with Ethan. What a pipe dream that seems in retrospect. It was based on the hope that my energy levels would remain at the levels I experienced during pregnancy, but I should have known better than that. My specialist warned me not to expect my improved symptoms to last, but I continued to hope. Silly, silly me. After going off on long-term sick leave in March 2011, we quickly realised that there was just no way I could cope with having my son home with me alone. It was too exhausting. So, we clutched our wallets closer, and started Ethan in nursery full-time. Gulp! Childcare costs are just ludicrous here in the UK – we pay more for Ethan’s childcare than we do for our mortgage! And none of the benefits offered to disabled people even remotely cover the cost. While able-bodies people can procreate at will, those of us with disabilities who can’t be stay-at-home parents, have to wait until it’s affordable to have a second (or third) child. It just seems so unfair. Sorry, that’s my rant over…my apologies for getting side-tracked!!

A year down the line, and Ethan is still in nursery full-time. He adores going, and there are a couple of the care workers there that he is completely besotted with. I’m certain that he sees them as an extension of our family. I am constantly wracked by guilt that he is in nursery 10 hours a day, 5 days a week. He sees the nursery staff more than he sees either Chris or myself. So, although I’m glad that he’s so happy there, I constantly wish that things could be different. I suspect that firmly tied to the guilt I feel, is a hefty dose of jealously too. I am jealous of the time he spends away from me. He has a whole piece of his life that I’m not a part of. It cuts me more deeply, I think, than anyone realises. Whether I should or not, I take it as a failure on my part. That I’m not able to be the mother he deserves. The sensible voice in my head tells me that I shouldn’t take personally, a situation that I have no control over. But, that sensible voice is faint and far away. A whisper against the shouting of my heart. I would give anything to have him home with me more. I’d give a leg, maybe even two.

In May 2011, my GP referred me back to my local ME/CFS specialist clinic, to see whether they could offer any advice that could improve my symptoms. I decided to do my research, and arrive armed with questions and treatments that I would like to consider trying. I chose to drive myself to the appointment (so that my husband wouldn’t need take more time off work), and what a disaster that turned into. I was suffering with “brain fog” that day, and got horribly lost on the way. I left in plenty of time as I hate being late for things, but it wasn’t early enough, as things turned out. I phoned to say I was on my way, but had gotten lost, and the receptionist was lovely. She told me to calm down (I was nearly in tears by that stage), and that I’d be seen whenever I arrived. After a harrowing drive trying to retrace my steps, I arrived. I was in floods of tears at reception (they must just love frazzled ME/CFS patients), and cried off and on throughout my appointment. It was the most uncontrolled I have ever felt in a public place. And I never want to repeat it ever again.  Sleep was a major issue for me, and I had read that Trazodone is better for sleep disturbances as it is the only drug that induces stage 3 and 4 sleep! Who knew?! Obviously someone did, but clearly not the specialist. Why then, have I been on Citalopram for all these years?? And Zopiclone intermittently?? He agreed to advise my GP to change my meds, and the difference has been incredible. I finally have what could almost be called “refreshing sleep”. I still dream occasionally, but most nights I sleep deeply and wake feeling like I’ve slept. I also discussed LDN (Low Dose Naltrexone) with him, and he agreed to review the literature and advise me at a later date. His later advice was that it is still considered “experimental” for use with ME/CFS patients, and therefore couldn’t endorse its use until there was more evidence. He, yet again, suggested cognitive behavioural therapy (CBT), and yet again failed to provide me with any information about a local practitioner who knows that ME/CFS is a physical condition. So, my appointment basically improved my sleep, but nothing more. I can’t complain though, I’ve achieved far less from my appointments in the past…

I applied for a Blue Badge (disabled parking permit) in the first half of last year, and was turned down by my County Council. This is a common result, sadly, as ME/CFS is seen as a relapsing and remitting condition and therefore does not qualify you automatically for the permit. Of course. In July or August 2011, I decided to try applying for a Disabled Living Allowance at the suggestion of a friend (thank you, Fiona!). She suggested I ask one of the local disability charities to help me fill out the form, as they are more familiar with the sort of information that the government requires, so I’d be less likely to leave out relevant information. What brilliant advice. My husband took me through for an appointment at Disability Huntingdonshire, and a lovely gentlemen patiently listened to my, often rambling and off topic, answers and filled out the form on my behalf. I then had to jump through a series of hoops (including getting a report from my ME specialist) to prove my entitlement, until finally…my application was APPROVED!! I was surprised to be honest. I thought, at very least, I’d have to appeal the decision before having my DLA awarded, so being approved right off the cuff was downright amazing. And, after jumping through even more numerous hoops than for the DLA, I finally convinced Cambridgeshire County Council to issue me with a Blue Badge (though this finally happened at the end of January 2012!). So, I am officially one of the scroungers that you read about so often in the tabloids. Me, and my imaginary illness.

In October 2011, we travelled back to South Africa to visit our families, and more importantly, to allow most of them to meet Ethan for the first time. We were worried about how I’d cope with the demands of travelling, and opted to leave my wheelchair behind, as we were already transporting a pushchair and car seat for Ethan, along with 3 large suitcases and 3 pieces of cabin luggage. It’s amazing how much luggage one toddler requires! Seeing our families was amazing, and watching them with Ethan was just priceless. On my husband’s side, there were four generations of family present in one place at one time which was indescribably beautiful. I feel it more deeply, as on my side, there is only my mother, Ethan’s grandmother. His grandfather has passed, and his great-grandparents have been dead for years. It was a reminder of how much we, and Ethan, miss out on living so far away. While in Johannesburg, I visited a tropical medicine specialist who specialises in patients with M.E. I had a slew of blood tests done, which yielded some interesting results. I’ll cover this in more detail in a later post, as I don’t want it to get lost in this, more narrative, one.

In November 2011, I was contacted by my manager (as I am still on long-term sick leave) to arrange a meeting to discuss my employment. So, we met in December 2011 and again in January 2012. Somewhere in among those meetings, I was seen by the Occupational Health department at work too. I think I need to pause here for a moment to pay tribute to Dr Anne Price, the Occupational Health consultant who has flitted in and out of my life after every relapse, encouraging me and helping me back to work. She is one of those doctors who may not be remarkable in and of themselves, but who touch your life in a remarkable way. She is always so positive and encouraging, and has fought in my corner more times than I can count. She is passionate about her work, and I doubt she will ever receive the recognition she deserves. I raise my metaphorical glass to her.

Human Resources and my manager, both of whom have been so supportive over the years, sat me down in the meetings and told me that the time has come to discuss my continuing employment with the Trust. They asked Dr Price for her opinion, and she said (quite rightly) that I am in no state to resume my duties, and that it really is anybody’s guess when that situation might change. She prepared me for the eventuality that I might be about to lose my job due to my ill-health, and said that she would fully support my application for ill-health retirement. Due to her concise yet conclusive response, HR has started the process of submitting my application for retirement. Unlike some countries (South Africa being one of them), my employer does not decide the merit of my application. My application is sent to the government’s Department for Work and Pensions, who then decide whether I am eligible or not, and if I am eligible, whether I get a full or partial pension. As anyone who follows ME/CFS-related news in the UK will know, the government has a very patchy record with regards to appropriately assessing the needs and entitlements of those of us with fluctuating conditions. So, with that in mind, I’m not counting my chickens just yet. I fully expect to have my application refused.

If my ill-health retirement is approved, then I will meet with my manager to decide a leaving day. If it is unsuccessful, I will meet with my manager and HR to decide on a date for termination of my employment contract on the grounds of ill-health. I lose my job either way, the only difference being whether I receive a pension afterwards. I feel like I am in limbo while the process takes place, powerless to influence or change the outcome. I just want it to be over already, so I can move forward (albeit it metaphorically) with my life. And, so I wait.

From the middle of January 2012, my health has taken a sharp nose dive. I can’t identify a precipitating factor as such (well, no virus anyway), and am putting it down to the “stress” associated with my work situation. It is so disheartening. I have suffered with moderately severe symptoms for a year now, and had just started to accept that this was how things might be indefinitely. And then I got worse. So much worse. I am now almost completely bed bound. I can just about make it to the toilet and back from my bed, by holding onto furniture and walls. I need my husbands help to shower and wash my hair. I hate that I’m reduced to that indignity yet again. I wish everyday that we had a “normal” marriage, where the only reason that my husband would need to touch my body would be for pleasure. Not to bathe me. My ME/CFS has stolen a part of my sensuality that I fear I may never get back. In the wake of necessity, I have lost my feminine mystique. He tells me that he doesn’t mind, and I know that it is true. And the enormity of my husband’s love crushes me. And it gives me wings.

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.