Gratitude 101: be grateful for small mercies

A walk in Sussex. Photo by Jess B.

As bad as I have felt these past ten days or so, I am grateful that it is not worse. Because it could have been. As much as I hurt, ache, burn, throb, melt, freeze, spin, crave sleep, cry and many other nasty things besides, I have to stop and acknowledge that it could be worse. ME/CFS could have flared even more. I am grateful for small (very small it has seemed at times) mercies. Although a quick shower has left me having to lie down for fear of my knees buckling and legs giving way, at least I’ve still had the energy and gumption to shower.

I am grateful that the flu vaccine didn’t send me down with full blown flu. I am so very very grateful for that. Joint pain, myalgia aching muscles, headache, temperature craziness, sore throats, zero energy, sheer physical and mental exhaustion, sleepiness etc etc is doable compared to all of that plus raging bad cold, cough and all the other viral nasties of proper flu. Touch wood, pray hard, flick the light switch three times (I’m not a superstitious person at all…) that this is it. That the flu buck stops here. I’ve had the vaccine. Had after effects but now I’m protected. I damn well better be!

I am increasingly grateful for a sexy little thing called compression stockings. Okay, so they’re not sexy (especially not sexy when my ‘less than optimally toned’ thighs are squeezed into them) or so little (little wouldn’t cover the aforementioned thighs!) but they are amazing. When wearing them the throbbing in my ankles and calves is reduced to a dull ache. It is still there but it is not as acute. I still get the weak feeling that sends me to a horizontal position on the sofa but it is not as extreme. When I walk in them I feel a little like I’m walking on water I am so supported. And the dizziness and ‘head lifting’ sensation on standing up or turning round is reduced. And when I take them off after a day of wearing them, the pain instantly cranks up and I’m like ‘ah the effort (and it is effort, to begin with it took both my Mum and myself 20 mins + to get them up my legs, a great mother daughter bonding experiences…tho not one I’d recommend if you don’t have to!) of putting them on is so worth it’.

I am very grateful I saw sense and didn’t attempt to go out for lunch on Sunday with Mr B’s family, as much as it pained me to stay at home. It was most definitely the right decision. After 30 mins or so chatting over coffee (which Mr B made not letting me get up out of chair) with them I was wilting. I could feel the fatigue setting in. Mr B’s Mum saw this and ushered everyone off to lunch. I am grateful for that understanding and acknowledgement. Whilst they all tucked into roast lunch I had a quick bite to eat (rice cakes and guacamole, Mr B said he felt very sad leaving me to eat that but honestly I didn’t mind) and then fell asleep for an hour and a half. Yes I’d have done myself no good and been utterly rubbish company if I’d gone out for lunch. So for once common sense prevailed!

On a lighter note, I’m so grateful for good TV at the moment. I’m spending a lot of time horizontal on the sofa. I can only read for a little while (like 10 minutes) before the words start to swim on the page and the fatigue curtain falls over me. But I can tolerate TV for much longer (about 30 minutes). Though I have to keep the sound quite low as that has a tendency to hurt my ears…. I’m not watching endless chat shows and other day time TV fillers though. I know some people love that stuff but for me it sends me straight down the fed up depressed path; somewhere I’d very much rather not be. So I am grateful for the Autumn/Winter programming schedule to be in full swing with shows such as Great British Bake Off, Master Chef Australia, Strictly Come Dancing and XFactor (awful but somehow we still watch it) to entertain me.  Our Sky+ box means I can record all these things and then watch in short bursts as and when I need a light activity to occupy my time. I am also loving Friday Night Lights. My sister sent me the boxset as a surprise. I’d never watched the show before and I am loving it! Sadly though I am already onto the fifth and final series so shortly I am going to have a FNL shaped hole in my life! But hopefully by then SHE who MUST be OBEYED (a.k.a ME/CFS) will have got back in her box and this flare will have calmed down enough for me to resume other activities.

TV aside I am also grateful for it it being Autumn. I love the crispness and chill to the air which hits me when I open our window each morning. I just love the freshness. It feels cleansing some how. And that’s despite it being pollution filled London air! I’ll pretend I’m at the top of a peak in the Swiss Alps breathing in clean, fresh, beautiful air!

I’m grateful for the blue skies. Yesterday when I ventured outside for the first time in a while I was struck by watery sunshine that was surprisingly warm. I went for a little (very little, all of about 5 minutes, but hey that’s progress from not being up to making it out of our front door as had been the case up to yesterday) walk just around the communal gardens of our apartment complex. I sat on a bench for a few minutes to give my aching burning legs a little rest and marvelled at the glorious blue sky and the auburn orange brown leaves scattering the cobble stone walkways.

I am of course also forever grateful for Mr B’s love and support. His actions and words mean everything to me and he still continuously surprises and amazes me at how selfless he is being in looking after me. I am also forever grateful for the love and support of my Mum, Dad, sister and closest friends. The list of what I’m grateful for from these loved ones is long but I appreciate every little thing you all do for me so very much. This all goes without saying I hope.

What are you grateful for?

A 2nd Is Always Followed By A 3rd

New Court from the Backs of the River Cam.

” A 2nd is always followed by a 3rd”.

This was a popular mantra at St John’s College in Cambridge. The College I was lucky to call my home for the three years of my undergrad degree.

This notion was mostly applied to drinking games – a 2nd shot had to be followed by a 3rd; and sport wins – a 2nd double league and cup win by the college rugby team “The Red Boys”, of course had to be  (and was during my three years at St John’s) followed by a third double win completing the hat trick.

The Bridge of Sighs over the River Cam at St. John’s College Cambridge. My final year room overlooked this beautiful sight.

I remember a friend of Mr B’s bumping into us as we went out of the college gate for a celebratory dinner date on our 2nd anniversary. He jokingly said, ‘you know a 2nd is always followed by a 3rd’ meaning we would be together for a third year; which, now approaching a decade together, we of course achieved with flying colours.

Luckily the sentiment was not applied to degree results i.e. a downhill slide from a 2nd class result one year to a failed 3rd the next was not encouraged and in the main avoided!

St. John’s Collge’s Great Gate, the front entrance to College.

Anyway I’m waffling, caught up in happy college years memories.

In the spirit of a “2nd is always followed by a 3rd” this is my third (and I hope final) post about the flu jab. If you haven’t read my first two (they’re gripping reads do check them out!) here and here.

I am very happy to announce SUCCESS! On Tuesday afternoon I had my flu vaccination. Yippee! Hallelujah! This put an end to 48 hours of wondering, worrying and faffing about trying to get it done.

After the failed attempt on Monday, I spoke with my GP. He is wonderful and gave me the advice I needed to hear (despite him being on leave at the moment). He assured me fludrocortisone (the tiny half pill I take each day to stop my blood pressure plummeting on standing up) was not a contraindication for the flu vaccine. The pharmacist on Monday morning had unnecessarily freaked out. You see there is concern about giving the flu vaccination to anyone with a lowered immune response. Steroids cause you to become ‘immunosuppressed’ and extra precautions have to be taken for those people on regular heavy steroid doses. Fludrocortisone is a mild steroid. But it does not elicit a lowered immune response.

With this pacification and reassurance from my GP, I went off to a different pharmacy on Tuesday, made no mention of the fludrocortisone, or the fact I have ME/CFS for that matter (I was the happy healthy high flying lawyer that I always intended to be by the time I was 30) and got the flu jab done and dusted in 5 minutes flat. Easy Peasy. Well kind of.

The actual appointment and injection were fine. Getting to and from the pharmacy was less fine. And the after effects through Tuesday evening were anything but fine.

Mr B couldn’t get out of work to come home and take me to my second appointment in two days so we did the next best thing. I made my appointment at a pharmacy just round the corner from Mr B’s office so he was able to meet me there, go with me to the appointment, put me in a cab home and then go back to work.  So yes I got a cab home which was fine though my body was hurting so much by this point each jolt and bump in the road felt like my body was being shaken to death. Put it this way, I was very happy to get home and collapse on our sofa.

So yes I got a cab home. But me being the optimistic stupid person that I am, I decided I would be fine to go to the appointment on public transport. Hmmmm. Yes. My first time on public transport in London in, I don’t know how long, a year at least. For my second outing in two days (something I never do and steadfastly avoid at all costs) and when my body is flaring and I’ve plummeted way below my baseline abilities, I decided that the short walk to the end of our road to get on the DLR (tram) to ride the 8 minutes to Canary Wharf where Mr B would meet me was doable. And I guess it was doable. I did it. Though boy did it hurt. Walking to the end of our road seemed doable because it takes all of about 5 minutes, which is much shorter than the 20 minute paced walk that I’m up to at the moment. But I hadn’t factored in having to carry my handbag (and Mum yes I had taken out all the junk that I didn’t need so it was as light as possible!) or the fact that my body hurt like hell as an after effect of my week away last week and flu jab outing numero uno the day before.

Canary Wharf, tall buildings! Photo credit: Morgue File User alltooeasy

Suffice it to say by the time I made it to the DLR stop my arms and shoulders were burning and aching so so bad. I had stripped off my jacket and little cardigan and was walking along in just my strappy top. I was sweating buckets (lovely image I know, but perspiring like a lady just doesn’t cut it) despite there being a real Autumnal chill to the air, it being October 1st and I was walking along the pavements of grey old London and not some tropical beach. My skin was cold to touch and clammy. And yet I was so hot. But on the plus side, thanks to my compression stockings my legs and ankles didn’t feel too bad – yay!

I was very happy to collapse into a seat on the DLR and to see Mr B’s smiling supportive face when I reached the other end. He took my bag – he is used to looking like a crazy man with a lady’s handbag by this point! I kept saying ‘look at all the tall buildings’ and ‘look at all the people’! I don’t get out too much….

In the pharmacy I put my cardigan back on and pulled my hair up and off my sweaty neck. I needed to look ‘healthy’ after all!

A few questions, quick prick of the needle in my arm and we were on our way again. Mr B put me in a cab with the instructions of ‘get yourself on the sofa and if you feel ill, call me.’ Other than the jolts racking my poor body the journey home was much more ‘doable’. And getting home I collapsed on the sofa with rice cakes and peanut butter and green tea. It was about this point when the dull headache that had been above my eye brow since getting on the DLR exploded into a full on throbbing, pounding horror. Queue me going to bed in the dark for an hour with a meditation track for company. But the headphones hurt my head so I just laid there. Eventually succombing to co-codamol when it became apparent that tiger balm and resting in a darkened room were not going to get close to solving the head drama.

Sadly nor did the co-codamol. I spent much of the evening lying flat face down (the least pain inducing position I could find) on the sofa with a cushion over my head and eventually dragged my sorry little self off to bed.

Today, Wednesday, sat writing this, I don’t feel too bad. The arm that had the injection feels a bit dead, very heavy and achy if you know what I mean.  And my whole body hurts. But that is to be expected. I went out two days in a row. And we all know with ME/CFS that just encourages the beast to flare! I’m going to take it really easy for a few days and hopefully that’ll let my body heal without any viral flu jab side effects.

So this post has become an essay. Apologies for that. But the saying goes ‘ a 2nd is followed by a 3rd’. The saying is not ‘ a 3rd is followed by a 4th’. And I don’t know about you, but three posts about flu jabs is quite enough!

All photos in this post courtesy of St. John’s College, Cambridge Official Website: http://www.joh.cam.ac.uk unless otherwise stated.

Today is a New Day

Well yesterday didn’t go to plan at all. In a nutshell it was a bad day all round.

It didn’t go to plan because I didn’t get my flu vaccination and it was a bad day because I felt physically awful. Pretty much an epic fail all round. Thank goodness today is a new day.

Yesterday started off badly with me waking up drenched in sweat, shivering and covered in goose bumps twice during the night. I woke up from very vivid dreams of me being back at law school whilst ill and trying to work at the restaurant job I had as a teenager. Not a calm or restorative night’s sleep in any way.

Come morning I woke up exhausted and achy. Achy beyond words. My ankles, arms and legs burned and ached so much they felt too heavy to lift. This was before I even dragged myself out of bed. On making it downstairs I slumped at the breakfast bar, the effort of getting onto the stool nearly too much. Mr B had taken the morning off work to drive me to my flu jab appointment. Thank goodness he was there. He made me my breakfast through a Q&A back and forth with me ‘so you need hot water in this cup for your salt?’, ‘yes’, ‘how much salt’ ‘half’, ‘half what?’ ‘half a teaspoon’, talking and making sense was hard for me. ‘You need cold water in this glass?’ ‘yes and then whisk hard to dissolve the fibre supplement’, ‘what goes in the bottle with the Ribose?’ ‘cold water’ and ‘where’s your muesli?’ ‘in the fridge’, ‘anything else?’ ‘just a cup of tea please’ ‘which tea?’ ‘green in the tea caddy on the side please’ ‘No wonder you’re exhausted, making your breakfast is tiring’ was his conclusion.  ‘Weak laugh’ from me. He has a point.

Having eaten it was time to hit the shower and get dressed ready to make it to my 10am appointment. Ah yes, I remember why I usually don’t get dressed until midday. My body can’t cope with that much activity that early. Shower and a rest lying back in bed and we were ready to leave.

All was going smoothly as Mr B pushed me into the pharmacy to my appointment. I went into the consulting room clutching my health questionnaire and Mr B loitered outside with my wheelchair. The pharmacist quizzed me about my medications. Amitritriptyline. Fine.  Cipralex, Okay. Melatonin, Fine. Levothyroxine, Okay. Dianette, Yes, and Fludrocortisone. Oh.

‘Oh’…never a good response. Turns out because of that drug the pharmacist is unable to give me the vaccination. That medication means my immune system is compromised. Errr I know my immune system is compromised, I have ME/CFS, that’s why I need the vaccination! ‘I’m so sorry, but I’m not able to give it to you’. ‘But my ME/CFS consultant, a neurologist has told me to have it…”But I only take 50 micrograms a day, it’s a tiny dose, I cut the pills in half for goodness sake’. ‘But I went through my medications with the pharmacist when I made my appointment’, ‘Well he made a mistake. I’m terribly sorry for the inconvenience.’ ‘But,,,,But,,,,’

I don’t think she quite grasped the inconvenience. A trip out with ME/CFS is, to be honest, an inconvenience at the best of times. Never mind when it is first thing in the morning on a day when my body is flaring, when Mr B has taken time off work in order to get me there. And all for nothing. Great. Total waste of time and what’s more important, a total waste of my precious energy.

So now I’m left trying to figure out if I am eligible for the flu vaccination at all or whether my specialist overlooked the fludrocortisone when advising me to get vaccinated. Queue fed up enquiring emails being sent off to both my specialist and my GP and numerous phone calls to local GP practices and pharmacies. So far no one has been able to give me a definitive answer. Fingers crossed I get a response today. I’m inclined to think the pharmacist got it wrong. Not being mean but she seemed a bit of a job’s worth and trying to protect herself. Fair enough I suppose…..

Thank you so much lovely blogger virtual friends for all your lovely comments on my post yesterday. I really appreciate your support and your views and I’m sorry I haven’t replied to you all yet, I will, it’s just writing this post has taken all my energy for now. My arms hurt so much. I shouldn’t have written this much, but I wanted to so I did. Yes stupid I know. Your comments just strengthen my resolve that the flu vaccination is a very important tool in protecting my recovery. May I ask a favour of you? Pretty please? Do you take fludrocortisone? Has it prevented you from getting vaccinated? Do you know anyone who does? Are you a pharmacist or a doctor, do you know about the interaction of this drug and this vaccination? I’m not asking for medical advice just canvassing opinion to support my case!

And now I must stop typing. My arms are screaming at me to stop, aching and burning. I’m slumped in my chair, it’s an effort to sit up. Back to the sofa I go.

Today is not yesterday. It is a new day and things can only get better 🙂 And repeat…Today is not yesterday. It is a new day and things can only get better.