Been Too Daunted To Post (part 2)

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.

9 Responses to “Been Too Daunted To Post (part 2)”

  1. I can’t imagine how difficult it must be to be a new mother with ME. My youngest son was 4 when I got sick – that had its own challenges but those early years are just so demanding. I know it;s hard but try not to feel guilty – it sounds like he loves where he is and that you have found a nurturing environment for him during the day.

    I know things are different in the UK than here in the US. I have applied for disability here and have so far been rejected twice. Now I am waiting for my court date, for one last shot to convince them I am disabled.

    So glad you are at least getting good sleep now! My son and I both take trazodone, too, and it helps a lot. Sorry you couldn’t get LDN – there are plenty of doctors here in the US who still consider it experimental, too, though it is silly when you consider it is being used in such tiny amounts and has been safely used at 17 times that dose for decades! Two other treatment approaches to look into are Immunovir (which is manufactured in ireland) and Orthostatic Intolerance treatments which can make a HUGE difference in daily functioning. Immunovir and beta blockers for OI have greatly improved my condition this past year. I know ME treatments are harder to come by in the UK, though.

    As for your current relapse, we often get worse in the winter months because of the presence of viruses. We don’t actually catch the viruses, but just being exposed to them further stimulates our immune systems, making all of our CFS symptoms much worse. Having a child in daycare pretty much guarantees a steady stream of new germs into the household! It’s the same with my sons and school. My son is just coming out of a months-long relapse. Immunovir has helped me a LOT with these sorts of virally-induced crashes.

    You make a good point about sensuality – it’s something no one talks about very much but certainly a significant loss for those of us with ME.

    I hope you see some improvement soon.


    Live with CFS

    • Thanks so much for taking the time to reply, Sue.

      Winter is always a rough time for my ME/CFS, although it’s never left me as poorly as this. I guess that it’s a bit naiive to think that only one thing can cause such a massive relapse of my symptoms. It’s probably been a combination of factors, not least of which is the multitude of virus floating about! I’m such an “organised thinker” (though that’s a relative term, with my brain fog being what it is) that I like to file my experiences away on ordered little piles so I can make sense of things. But ME/CFS isn’t so simple, is it?!

      I’m going to look into the Immunovir later today. I’m always looking for “new” things to discuss with the specialist at my appointments – if nothing else, it educates him on what options are out there!! *sigh*


      • Megan Swain Says:

        Dear Sam,

        I only stubled upon your vlog this pm around 1am, now just passed 4am, took me that long to compose response to one of yr followers and figure-out Imhad to log onto FB to respond – didnt know what to enter for URL, nothing was accepting.

        Your words about relying on yr husband for care really touched me as Im in the same boat. U have to be in toch when next u visit SA so we can get a cuppa, think it will be mutually beneficial, even if we only ramble together and cry in our coffe together 😩

        I hope u get this, on ipad wich operates “differently” and am very tech challenged so dont know what Im doing with regard to yr blog, am reading out of sequence & earlier lengthy posting with my brief history/background goes back some yrs and isnout of sequence I think?? Do not sure if u seen it?

        Regardless, hope we can connect next time u in SA.

  2. I really admire you, Sam – you’re one strong superwomen! xx

  3. Robinette Says:

    Wow Sam, yet another amazing post, very touching left me with tears. Sounds like u have so much awesome support especially ur husband xo

    • Thanks Robinette! i’m so pleased that you have taken the time to read my blog on more than one occasion. It means so much to me. You know, I doubt I could continue on this journey as well as I have done, without my husband. I truly believe that people are placed in our lives for a reason, and I’m not sure I could have done it without him. So I try to never take his contribution for granted. He lives his wedding vows daily…for better or WORSE, in SICKNESS and in health. Amazing, isn’t it?!

  4. Tracy Salter Says:

    Hey Sam, I just read all ur blogs now, actually came and lay down on my daughters bed (kids are at school) so I could have some quiet time to do so. I have great admiration for u. I will admit I am so saddened by ur situation, not been able to even imagine what it must be like! But the admiration I have for u out shines the sadness, the fact that u keep going, keep fighting, keep looking for new answers, u are and always will be a strong woman, a great mom and a wonderful wife. U have an amazing husband, and I’m so happy u have him coz being so far away from ur support system must be hard!! But I just wanted u to know I admire u and ur strength, and I will continue to follow ur blog! Thank u so much for sharing!!

    • Hello, my lovely!
      Living so far from our families has definitely been one of the toughest challenges since starting my M.E. Not having family nearby to fall back on has meant that we’ve struggled more than we might have done otherwise. But, the UK is far more “disability friendly” than South Africa, so we couldn’t think of moving back, even if we wanted to. So, we muddle along as best we can, and it has strengthened Chris and my relationship no end.
      Thanks for the support!
      Sam x

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