Dr Cecile Jadin

My sister, Keriann, is a chiropractor in South Africa, and is always on the lookout for things that might help ease my M.E symptoms. She forwards me articles and information when she finds something that might be useful, and I am always grateful to her when she does.  I know that they stem from her deep desire to see me get better. Or, at very least, better than I am at present. She lives so far away, and she isn’t able to help me on a practical daily basis (which she wishes she could), so it’s her way of trying to make a difference in my life.

My sister has a patient that came to see her last year, a few months before our trip back to South Africa. He suffers from M.E. and my sister mentioned that I have it too. He told her about a doctor in Johannesburg that he’d been to see, and that her treatment had changed his symptoms for the better.  He had been referred to the doctor by another M.E patient of hers, who improved so significantly that he ran a marathon late last year! So, of course, my sister asked him for the details of this doctor, and she arranged two appointments for me, during the period that I was going to be in Johannesburg.

Let me give some background on this doctor, to better illustrate her approach and treatment protocol. Dr Cecile Jadin is a Belgian doctor who has practiced in South Africa for two decades now. She is the daughter of the late Professor J. B. Jadin, a colleague and friend of Charles Nicolle who won the Nobel Prize for Medicine in 1936. Professor Jadin studied intracellular bacterial infections, and was considered an authority on rickettsioses and neo-rickettsioses, on malaria, leishmaniasis and various other organisms. He worked at the Pasteur Institute in Paris and Tunisia. In the mid-1980’s, while practicing in South Africa, a friend of Dr Cecile Jadin’s was suddenly struck down with a debilitating condition, later diagnosed as M.E. Based on her knowledge of her father’s work, Dr Jadin wondered whether her friend might have a rickettsial infection. Blood tests were done in South Africa, but the results were negative. The test used was the Weil-Felix test, which was still the test of choice for a lot of pathology labs, despite having been shown to lack both sensitivity and specificity (CDC, 1989). Dr Jadin therefore decided to send a sample of the blood to her father’s laboratory in Belgium for testing, using  his Micro-agglutination test (Giroud method). The result came back positive! The blood showed antibodies for two different Rickettsia strains. The infection was successfully treated with tetracycline, and her friend’s symptoms improved significantly in a very short space of time. This result led Dr Jadin to wonder whether there were more people diagnosed with M.E (or even fibromyalgia) who might also have their symptoms partially or even fully explained by bacterial infection. And so, her practice was born.  Over the years Dr Jadin’s approach has been challenged on various fronts, but the fact that so many of her referrals are a result of satisfied patients recommending her, I decided that it was worth seeing what she had to offer.

My first appointment took place on the 14^th October 2011, the day after we’d arrived in Johannesburg. My husband drove us up to her practice on the northern outskirts of the city, and I was enchanted by the peaceful surroundings. We had to wait almost an hour for my appointment, but finally I was ushered in. Dr Jadin has a heavy French accent, and I struggled at times to understand her questions and comments. She had asked me to bring a full set of blood results with me from the UK, which my lovely GP has furnished me with prior to our trip. She looked over my medical history, scanned the blood results, then took me to a side room to weigh me, take my vitals (blood pressure, temperature, etc) and feel my lymph nodes. My throat was particularly raw that day with my lymph nodes the size of walnuts. She then checked over my skin to look for any obvious signs of a bacterial infection. I had a patch of contact dermatitis (which I get on occasion) on my belly which she tutted over, commenting that it might be bilharzia and that blood tests would tell us more. Once back at her desk, she said that she would recommend a panel of blood tests be done, to see whether I had any antibodies indicating a bacterial infection. These blood tests were not cheap (almost £750!), but Chris and I decided that it would be worth the money if they provided us with some answers. So, we took a deep breath, and headed to the pathology lab to have my blood drawn and the testing started. I had the most complete set of blood work done that I have ever had in my life. Every aspect of my blood chemistry was looked at including inflammatory markers, and liver and thyroid function. I was also tested for antibodies to Mycoplasma, Chlamydia Pneumoniae, Chlamydia Trachomatis, Toxoplasma, Borrelia (Lyme Disease), Helicobacter Pylori, Brucella, Coxiella Burnetti (Q Fever), Bilharzia and Rickettsiosis!

It was another week before my next (and final) appointment with Dr Jadin. It’s strange, but I knew with certainty that I would test positive for a rickettsial infection. I suppose it made a kind of sense to me, as my symptoms had first started 3 weeks after a trip to South Africa, albeit triggered by a dodgy tummy that I picked up at work. And so, when I walked into Dr Jadin’s office on the 21^st October 2011, I was fully prepared for the results that she gave me…

My blood had tested positive for the following antibodies:

• Mycoplasma pneumonia IgG,
• Chlamydia pneumoniae IgA (acute) & IgG (chronic)
• Rickettsia Conorii (spotted fever).

In addition to the bacterial antibodies, my iron tested slightly low with “results suggestive of depleted iron stores in the presence of an acute phase response/non-specific tissue damage” and my immunoglobulins (IgE) were raised.

So, you may ask, WHAT IS RICKETTSIA? In the week leading up to the results, I did some research into the various bacteria I was tested for, just so I knew a little more about each of them. Rickettsial infection was first discovered in 1909 as Rocky Mountain Spotted Fever. Rickettsia bacteria can be found in ticks, lice, fleas, mites, meat, milk, faeces and dust. The bacteria spread in the bloodstream and infect the lining of the vessels. They then grow and multiply until the cell they’re in bursts and releases them black into the blood stream, to spread even further.  The bacteria can last for a very long time in your system by doing this, and can invade various organs and lymphatic tissue. Dr Jadin, therefore, postulates that the Rickettsial infection can cause a myriad of symptoms associated with M.E.

“Rickettsia release into the bloodstream three types of endtoxins, which have different effects. All or some of these endotoxins may produce symptoms. First, endocytokines that will cause inflammation and pain; second, neurocytokines that would be the origin of neurological symptoms such as demyelination found in MS patients, and psychological symptoms such as depression, anxiety, troubled behaviour.” (CL Jadin, 1999)

So, after 4 years of having M.E, I had another piece to the puzzle. Dr Jadin started me on a treatment regime, which included one week of treatment per month, over three consecutive months. I completed the three course of treatment just before Christmas. I obtained all the medications whilst in South Africa to complete the course.

• In all three cycles of treatment I am prescribed the following:
  • Nexiam 20mg – before breakfast.
  • Neurobion (Vitamin B Complex) – with breakfast.
  • Lacteol (Probiflora) – 2 tablets with lunch.

• First cycle:
  • Doxitab 100mg – 1 tablet with breakfast and dinner.
  • Austell-Ciprofloxacin 500mg – 1  tablet with breakfast and dinner.

• Second cycle:
  • Cyclimycin 100mg – 1 tablet with breakfast and dinner.
  • Purmycin – 2 tablets with breakfast and dinner.

• Third cycle:
  • Tetralysal 300mg – 1 tablet with breakfast and dinner.
  • Metazol 200mg – 4 tablets with breakfast and dinner.

I was also told to make some permanent lifestyle changes. They include avoiding caffeine, sugar (including honey, fruit juice and dried fruit), aspartame sweetener, unpasteurized dairy, raw meat and fish, and alcohol. I have also been advised to avoid supplements that include magnesium, glutamate, chromium, and vitamins A, D, E and K.

After the first and third course of treatment, I experienced a period of 4 – 5 days where my symptoms were significantly better – in fact, my energy levels were akin to those I experienced during my pregnancy. The improvements allowed me to hope that I might see sustained improvement like other of Dr Jadin’s patients. My hope was premature, however, and I slowly declined back to where I had started with my symptoms. I kept telling myself not to hope for too much, as that would only lead to disappointment. But it’s never as easy as that, is it?! Those brief glimpses at what my life could be like were so tantalising. So vivid. If only…

As you will know from reading my earlier blog post “ Been Too Daunted To Post (part 2)”, my condition worsened dramatically in January 2012, to the point where I am now mostly bed bound. My husband suggested that we contact Dr Jadin again by email, to see what she might suggest that would help. We received a very brief email in reply (much to our annoyance), indicating a further 3 months worth of medications, and asking that we pay €90 for the “consultation”. There had been no discussion about what might have caused the worsening symptoms, and no discussion about any other approach than this new course of medication. Due to my imminent unemployment, we do not have the financial resources to purchase our medication privately, so being asked to pay for a prescription that we weren’t going to be using seemed a bit of a cheek. After some emailing back and forth, my husband managed to negotiate that we pay just over €30 instead.

I went to see my (very patient) GP, and he agreed to assist me with one last ditch effort at treating my M.E. with antibiotics, as prescribed by Dr Jadin. He highlighted that it is not an accepted form of treatment here in the UK, but that he’d support me by prescribing a single week of medication. My GP is an amazing man, who tries to remain open-minded about every new treatment approach I bring him – I dread the day he retires (as he’s pretty long-in-the-tooth already) as who knows if my next GP will be as understanding! So, on Sunday I started my final course of the antibiotic cocktail, that included:

• Doxycycline 100mg – 1 tablet with breakfast and dinner.
• Ciprofloxacin 500mg – 1  tablet with breakfast and dinner.
• Omeprazole 20mg – before breakfast.
• Vitamin B Complex – 1 tablet with breakfast and dinner
• Vitamin C 500mg – 1 tablet with breakfast and dinner
• Folic Acid – 1 tablet with breakfast and dinner
• Probiotic – with lunch.

So far, I haven’t felt much improvement. Today is my first “brain fog”-free day in weeks, so perhaps that is a sign that the medicines are helping. I’m reserving judgement, however, and will post again once the treatment is complete.

I sometimes wonder, collectively, how much we M.E. patients spend per year (of our own money, I mean) chasing the mirage. If everyone else is like me, so worried that the treatment you don’t try is the one that just might have worked, then I’m sure that the sums of money spent must be substantial! For good or bad, it’s the financial constraints imposed on us by the M.E (limited , if any, capacity for work) that limits how much we spend on our search for answers. Oh well.

LINKS:

• Dr Cecile Jadin’s website – not the easiest to read, let me warn you.
• Research Article – Multiple co-infections (Mycoplasma, Chlamydia, human herpes virus-6) in blood of chronic fatigue syndrome patients: association with signs and symptoms

Overwhelmed…In The Best Possible Way

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.

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.

Been Too Daunted To Post (part 1)

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!!

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!

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

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

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.