Jess the Red Nosed Reindeer

Rudolph The Red Nosed Reindeer Photo Credit rezdora70 via Morgue File

It is 4 years ago to the day since I got sick. Or rather, it is 4 years ago to the day that I was too ill to go to work. My ME-versary if you will.

Back in December 2010 I had been ill for nearly a week but work was crazy with a big transaction aiming to complete before Christmas so I didn’t feel I could take time off. The office was full of winter coughs and colds and the clever decision to hold our department Christmas party in a basement bar only exacerbated matters. The Monday morning following the Friday night party, the office was half empty with people having gone down with the flu. Those of us that were stupid enough to have gone in, were coughing and spluttering, running fevers and generally being hotbeds of germs. I lasted two days working in this state, including attending a client meeting in Birmingham, 2 hours each way by train. I left the office at 8.30 pm on the Tuesday night taking work home with me. I intended on going in the next day, I left my glasses on my desk, as I so often did when I left late and wouldn’t be doing anything more than dinner and bed when I got home.

Wednesday morning I got up early and was walking to the bus stop just before 7 am. I felt awful. The effort of getting dressed had left me in a hot sweaty clammy exhausted mess with tears pricking at my eyes. But I thought if I just went into work that morning I could get my work load under control and then have a few days off to get better. But as I walked to the bus stop, I started to cry. It had snowed a few days earlier and the lying snow had frozen over night. Walking without sliding was near impossible and far too much effort for my poorly body. I had only gone a few steps when I decided to phone my Mum. I know she remembers this conversation as well as I do:

Mum: ‘Hello?’

Me: ‘Hey, it’s me’

Mum: ‘Where are you?’

Me: ‘Walking to the bus stop’

Mum: ‘What are you doing? Go home. If you carry on like this you’re going to end up in hospital. GO HOME. You’re no use to anyone in this state’

Me: Okay…

I knew I wasn’t well enough to go to work but thought I should be going. I needed someone to tell me. And so I turned around and went home. I thought a couple of days off and I’d be back at work before Christmas. How wrong was I. I didn’t return to work until the following April and even then it was only part time and short lived. (If you want to read my story in full see this post).

Viruses are so often the start of ME/CFS and so instill a real fear in those of us with this illness. Over the last few years I have done everything I can to avoid catching colds or the flu, knowing that they have been the undoing of me so many times before. ME/CFS is horrible. ME/CFS + the flu is just plain mean.

For me and so many others the fear is totally understandable, given how my life my changed in 2010 thanks to catching the flu virus doing the rounds, it is only natural that I would be scared of what catching a cold or the flu would now do to me. But no good comes from feeling that way. The fear of ‘is this going to make me relapse’, ‘am I going to go backwards’, ‘how am I ever going to get over this’, just heightens anxiety and increases the stress response in our already overly active nervous system. This in turn causes the standard ME/CFS symptoms to worsen, which seemingly validates our fears and fuels the fire even further, which in turn increases the stress….you get the picture. In short literally nothing good happens.

I am currently sporting a nice red nose and husky voice. I’ve caught the bad cold that has being going around over the last few weeks. I’m actually quite proud, I didn’t catch it from Mr B when he had it a month ago. My immune system is clearly more robust now than I perhaps thought. That statement still stands despite me now being a coughing, sniffing, Vicks vapour inhaling delight. As bad as I feel, I don’t feel anywhere close to as awful as I have felt many times before. My body has met this cold and said ‘NO! You are not taking Jess down, not this time’! And that in itself feels to me like an achievement and another milestone in my road to recovery. Yes my head feels like it is overstuffed and needs piercing to let the congestion out and yes all I want to do is curl up and snooze. But I am still able to function. I still cooked dinner the other night (egg fried rice with lashings of fresh ginger, onion and garlic, all good antidotes to head colds I’m told) and although I felt pretty rough by the time I got back, I was still able to go for a little walk to buy myself more anti flu medication yesterday.  When my ME/CFS was rife, even without a cold, even on a good day, I wasn’t able to do these things. So to be able to carry on and look after myself (and a drunken, hungover, stinking man as I did on Sunday) is definitely a score for me: Jess 1 ME/CFS 0.

The fear is still there. I guess it always will be. I am still learning to trust my body again. But I do genuinely feel the fear is less real this time. The further I move forward, little by little fear’s hold on me gets less and less. I can do this. I am getting better. I am recovering. ME/CFS is no longer winning and neither is this pesky cold.

For now though, I’ll keep myself swathed in cotton wool. I’m still fragile. I know that. I’ll keep being kind to myself and keep steering operation beat bad cold into submission: drinking my hot honey and lemon, eating clementines like there’s no tomorrow, slurping homemade soup, relaxing in bubble baths, watching trashy TV huddled under the quilt Mr B’s lovely Mum made for us, inhaling Vicks vapour rub and, when I feel like it, gently moving my body by doing soothing yoga like this Yoga for When You Are Sick sequence by Yoga With Adriene  (I highly recommend her You Tube channel for lots of free inspiring yoga videos by the way).

That’s all from me for now. Back to the sofa and quilt I go.

Until next time, stay warm and as cold germ and bug free as you can 🙂

Ice cream and soap makes everything better!

Capogerios Ice Cream. Photo by Jess B

On Saturday the sun was shining again, and I’m so pleased to report my bad cold / flu had subsided a bit. I’m not coughing or sneezing anywhere near as much and I’m starting to feel much more like myself again. It’s a good job because I was starting to get really p*ss*d off with my body. I’m sorry if I wasn’t happy and upbeat last week, I know hearing about someone else’s misery and down times isn’t particularly helpful, and usually I refrain from posting such. But on the other hand I don’t want to put a gloss over things, ME / CFS sucks and sometimes there’s nothing else to say but to admit that.

I try and be positive and handle everything ME / CFS throws at me with hope and optimism but this past week I have felt really really crappy. And it has really sucked feeling so bad and sometimes sitting in the black hole for a little while is just where you need to be! The black hole is definitely where I’ve been at times in the last week. I’ve been upset and cried more than once , I know I know that tears are not the answer but it’s hard to keep a smile on your face all the time, especially when your body seems to hate you.

What’s so frustrating is that ME / CFS wise I haven’t actually felt that bad. The acute myalgia pain and shattered feeling that I had the first few days we were in Philly hasn’t been there – or perhaps the cold and flu symptoms masked them so I didn’t notice! No, speaking positively and also honestly, I really think that without the damn cold I would have coped pretty well with the transatlantic flight etc. But hey life is what it is and there’s no point dwelling on it now. So onwards and upwards! Enough about my health, onto more exciting topics – like ice cream 🙂

We took full advantage of the sun and the seeming upturn in my health on Saturday and went out for…..nearly an hour and a half!! It’s all about baby steps….  We walked (or in my case was pushed) the few blocks from our rented apartment to 13th Street. This is a really cool street with lots of quirky fun little independent shops and cafes along it.

Photo by Jess B. The Soap Shop.

Our first stop was Duross and Langel, the ‘soap shop’ to me and my family. My sister discovered this place early on in her time in Philly. The shop is stocked full of bars of soap in every flavour and variety imaginable, from ginger to lime and coconut, pomegranate to ocean spray.

Soap! Photo by Jess B.

The display and range is huge and it’s great fun smelling (tho that was a little tricky with my cold!) all the varieties whilst trying to decide which to buy. In addition to soap they do candles, creams, lip balms –  the full nine yards of toiletries! I love their body moisturizers and bought Lavender and Egyptian Musk. The lovely owner also threw in a free sample of their latest soap creation – ocean spray, it’s a gorgeous turquoise colour and smells divine, so fresh and clean.

My purchases. Photo by Jess B.

Having used my energy choosing soap and moisturizer at Duross and Langel it was break time and we went to Capogiros, the World’s Best Ice Cream Spot, as voted by National Geographic, which is just a couple of shops down from Duross and Langel on 13th Street.

Capogiro Gelato. Photo by Jess B.

To my delight Capogiros had quite a few lactose and gluten free options. It was hard to choose! But I went for one scoop of pineapple and one of mango. It was sooo good! And really soothing for my poor throat that’s still hurting. My Dad had Philly Cheesecake ice cream (I thought he said cheese steak (a Philly food legend) but cheese steak ice cream would be pretty gross wouldn’t it?!) And actually it was cheesecake which Dad said was amazing. We were all quite restrained in choosing the ‘picolo’ size, which contained two scoops of ice cream. It was enough for us little Brits -tho if I keep eating ice cream I”ll be a not so little Brit!

My Dad’s Philly Cheesecake (not steak!) and my mango and pineapple flavours. Yum! Photo by Jess B.

If you’re ever in Philly I totally recommended a trip down to 13th Street. In addition to Duross and Langel and Capogiros, we also went in Open House, a lovely store full of home accessories and gifty things. I literally could have spent hundreds of dollars in there, but Lou led me out before I could, saying ‘Jess we can come back, you’re here for 6 weeks!’  There are lots of little eateries and wine bars along 13th too, as well as street art. Several of the sides of buildings are painted in vibrant colours which really brightens things up. The murals were stunning and really eye catching.

So all in all it was a great afternoon, and the perfect antidote to a week that had been cold and flu filled and far less than perfect. I was very tired Saturday evening and pretty achy after our outing even though we weren’t out for much more than 1.5 hours. But it was progress for me as when we went to Macy’s for the Flower Show I’d had it after 45 minutes and needed to come home.

Post outing tiredness and achiness is pretty much a given with ME / CFS and so totally worth it to get to eat the World’s Best Ice Cream!

Street art. Photo by Jess B.

Street art. Photo by Jess B.

 

Reporting from Philadelphia: bad colds and a taste of India.

Hello from a sunny Philadelphia!

Macys’ Flower Festival 2013. Photo by Jess B. 

The weather has warmed up, the sun is out and it really feels like Spring has finally sprung. And it’s meant to stay that way for the next week, which is fab. The sun always makes me smile 🙂

The weather is the good news. My bad cold is the less good news. The cold is well and truly still with me. I am Mrs cough – a -lot – sneeze – a – lot. My coughing, sniffling and spluttering is truly delightful to be around. I think I’ve probably kept CVS in business this week with the amount of Kleenex, cough drops and flu medicine I’ve gotten through. But hey, lets stop the wallowing and self pity, I do feel better in myself and I definitely don’t ache or hurt anywhere near as much as I did a few days ago (I’m typing this post myself, wohoo!). So that’s progress! ME / CFS is a walk in the park compared to ME / CFS + bad cold! I can’t wait to just have ME / CFS again – never thought I’d say that!!

Anyway, leaving the germs, tissues and coughing aside, I ventured out today for the first time all week. My Mum and Sister pushed me in my wheelchair down to City Hall Square so we could look at the Macys’ flower show. Feeling the sun’s warmth on my face and fresh air was so good.

Indian Elephant at the Macys’ Flower Festival. Photo by Jess B.

The flowers at Macys’ flower show were beautiful (not sure the photos above and below quite do them justice) though it was a little odd the way the displays were dotted amongst the usual clothes and shoes stands. The theme of the flower festival was India and there was a giant elephant draped in a dried flower throw at the centre of the display, a calming blue mosaic water feature as well as Macys’ ever present giant silver American Eagle.

Photo by Jess B. Beautiful flowers at the Macys’ Flower Festival 2013.

The American Eagle. Photo by Jess B.