Thursday, 18 August 2016

The perceptions of others

I am a bit nervous to go home today. It feels a bit silly to feel like this. But the other day, when the postman was ringing our doorbell & I was too poorly to get out of bed to answer the door, I overheard the woman next door say something about me in a tone that was most disapproving. 

In the end I somehow got to the door on the postman's third try - but that exertion wrote off the rest of my day because my body hadn't been ready to move yet. 

Our neighbours either see me through the window in my pyjamas lying in the sofa, or they see me dressed and walking the two metres to the car. Sometimes I drive, sometimes I am the passenger. 

They must know by now that I do not work. Perhaps they wonder if I work from home. We have never chatted with them for long enough to tell them about my health. Yet I worry now that some of them may have made assumptions about me, because of what I overheard through the bedroom window the other day.

Rightly or wrongly, I feel ashamed and embarrassed to say that I have M.E. It is a label that does not evoke the 'correct' response in most people. The word 'tiredness' is the only word that springs to most people's minds when you mention it. Some go as far as mentioning the words mental illness and psychological. My heart sinks every time. 

The stigma attached to those two letters M and E is something I have spoken of often but to live with the knowledge that the majority of people still do not understand the severity or complexity of this illness can be quite disheartening and damaging.

I am sure that our neighbours have seen us go out on my mobility scooter or putting the wheelchair in the boot of the car. Yet it must confuse them to then see me appearing to be perfectly 'normal'.

My health fluctuates. At the moment it is mostly at the lowest end of functioning but for the most part I can alternate between 'good' days and 'bad' days throughout the course of a week. 

Invisible illness is tricky. I understand that. I also understand that if this hadn't happened to me I would probably be none the wiser to the battle that sufferers of invisible illness face. 

So I am nervous. Nervous and worried about the perceptions of others. Everyone says that I'm not to worry; that I have nothing to prove - that I know how poorly I really am and those closest to me know it too.

But letting go of this worry is so much easier said than done. Nearly six years in and I still feel like a novice at times like these. 

Wednesday, 17 August 2016

Setback City

I often think that this chronic illness life is harder for those on the outside; those who have to watch us suffering and care for us as best they can, all the while knowing that they cannot cure us or make the illness go away.

Those of you who follow my Instagram account will know that I am currently in Setback City. It's definitely not a relapse - if it was I would be back to having to sleep in my parent's old dining room and having to be wheeled to the toilet. But it's also not 'just' a crash or post exertional malaise - it's definitely worse than that and has already lasted a good few weeks. Still, it's all 'normal' and par for the course with M.E. 

I am being very well looked after, just as I have always been. Yet I am conscious of the effect this worsening of my health has on those who have to pick up the slack. I do very little to help around the house anyway but at times like this I am unable to even make myself some toast or a cup of coffee. I cannot currently drive or even leave the house easily. For every little thing I do there is payback. I'm not able to read my books at the minute or watch much television. 

In the same way that my parents always did, Mr Tree Surgeon takes it all in his stride and insists he doesn't need or want any 'time off' from looking after me, but I feel it is important to look after him and give him a break from it all like I used to try to do for my parents. Every once in a while I would go and stay the night with Not-so-big Sis for 'Respite Care'. For my parents it meant a night off from cooking for and feeding me. A night off from feeling nervous and worried while I took a shower incase I became unwell while I was in there. That kind of thing. 

Last week Not-so-big Sis came over to cook for me so Mr Tree Surgeon could go out for a meal with friends as planned. Why should he have to cancel plans just because I need babysitting? I'll never forgot the feeling I had when my mum had to miss a wedding because I couldn't be left on my own...

So I have come for a little holiday with Ma and Pa Jones at their new house. It's a change of scenery, a different sofa to lie on, a different garden to sit in... And it's all on one floor which is always good when your legs are so weak and almost too painful to use! 




A home from home. 







Saturday, 13 August 2016

Better late than never

In July 2013 one of my uni pals and I had tickets to go to an outdoor cinema close to home. At the very last minute I had to cancel, and by last minute I mean she's already started her hour-and-a-bit journey to see me. I was gutted. Properly gutted. I remember sobbing in the garden and handing our tickets over to Practically-older bro and his girlfriend s that at least someone could go and have a good evening. My health was making me cancel yet another plan, one that my friend and I had been so looking forward to it and yet again I felt I was being such an unreliable friend. Of course she was as wonderfully understanding and supportive as ever, but I was still crushed.

Fast forward to July 2016 and we tried again, booking tickets for the outdoor cinema held at Burghley House each Summer. And guess what?! We made it this time! 

It doesn't get more 'feel good' than watching Hairspray and Mamma Mia with the sun setting in the background, stuffing your face with picnic food, and sitting with one of your old housemates. If that's not a wonderful way to mark how far I've come in those three years then I don't know what is! 












Saturday, 30 July 2016

Bleak

In 2012 I started this blog and in doing so I had made the decision to share my journey through chronic illness with whoever came across it I the Internet. 

So I will share all of it with you; the good the bad and the ugly.

Yesterday was hard. It was perhaps only the 3rd time in almost 6 years that I have thrown in the towel. I'm not even sure you can throw in the towel when you're chronically ill. There is no escape. 

But I think I meant that I would give up the tablets. Give up the rehabilitation. Stay in bed all day through choice rather than necessity. I wondered what the point was; what was the point in prescriptions that only alleviate certain symptoms a tiny bit. What was the point of getting up when I had nothing to do and nothing I was able to do without suffering for it... 

I went back to bed to rest because I felt poorly and then suddenly I couldn't help but wonder what the point of my life was. I closed my eyes to try to sleep - something I have not allowed myself to do for years after working tirelessly to correct my broken sleep cycle. Even if I'm hit by nights of insomnia I don't catch up on sleep the next day. Waking up after sleeping in the day makes me feel very, very ill. But yesterday I didn't care. So what if I slept during the day and undid all that work? So what if I woke up feeling worse? I could just go right back to sleep again because I had no reason to get up. 

I cried a lot yesterday. Properly cried. My soul felt broken somehow, as if the years of finding the good in such a bad situation had taken its toll. I was done. I wanted to run away from it all - give those closest to me a happier life by not having to look after me anymore. I shut down on myself. Completely. I didn't want to talk to anyone, didn't want to ask for help, didn't want to see anyone. 

But there is something within me that won't let me completely give up. It's as if my auto pilot function is set to remain hopeful and strong and calm.

I didn't sleep - I couldn't shake the knowledge that I'd be so disappointed in myself if I did. So I got back up when I was physically able to. I had a shower. I washed my hair. I put on clean pyjamas. 

I find my own positivity and outlook infuriating sometimes. I just cannot seem to give up on myself. Even on those three, rare days when I have wanted to give up I have somehow managed to cling on. For that I am incredibly lucky. 

It is only natural that a person in my situation should have days like yesterday. How I don't have them more often is beyond me. 

And yet I have to do it all again today. And then tomorrow. And then the next day. 

Wednesday, 27 July 2016

Weigh Day Wednesdays

I am now 3 whole stone heavier than I was when my M.E. journey began in September 2010. Today that fact makes me miserable. Everything wobbles. Nothing is toned. My thighs and bum are covered in cellulite and have lost the shape they once had. I repulse myself if I'm being truly honest. I feel disgusting. 

Okay so I was lazy at uni and put on a bit of weight. Ironically it was joining the gym that seemed to be the final nail in the coffin for my apparently exhausted body and within a two weeks of starting my membership, my M.E. journey had begun. 

When you have few pleasures in life, chocolate and treats can be hard to give up. But I have cut down on them so much. Yet still the weight piles on. If I am fending for myself I do not have the energy (or the skill) to create healthy meals. Instead I can do frozen pizza, fish fingers, microwaveable ready meals. All dependent on if I'm strong enough to open the oven/microwave door. Toast is simpler and easier. 

Frozen peas are the only vegetable I can regularly eat. Broccoli upsets my stomach. Fruit can make me feel poorly. One day I can eat it okay and then another it causes pain and upsets my digestive system. In spite of my unruly digestive system I eat well. 

I have lost my jawline and my waist. The only area that hasn't gained anything is the area that needs it most! My boobs. 

My stomach looks like an upside down bowl has been placed under my ribs. I can't see my feet when I look down and I am surprised that no-one has asked if I'm pregnant. I'm not. 

I am embarrassed to show any skin above my knees and I cover my arms with a cardigan even in sweltering heat.  

It's the lumps and bumps that get me, not the number staring back at me when I stand on the scales. At the time of writing this I am 14 stone and 4 pounds. I am 5'7 so I feel 'big' already.

I don't want "insightful" comments about how they're just numbers and the right clothes size is the one that fits. I feel fat. I miss exercise - and by that I even mean just simply being able to wander and walk around more.


So I have started my own little Weigh Day Wednesdays in the hope of keeping track of things. I have my little weight loss pom poms - each one representing 1 pound. 

If nothing else watching what I eat is giving me something to do ha ha! 


Monday, 11 July 2016

The Adventures of Anna Jones - One Happy Camper!

To say you are going camping when you're not very well is probably a tad ridiculous. For someone who's internal thermostat is most definitely broken to decide that sleeping outside in a tent with nothing but a sleeping bag to keep them warm seems rather silly. Add to that the fact that light and sound can and do induce pain, malaise and nausea, well it just doesn't sound like a good idea at all does it?

Yet I did it anyway! 

My parents and Mr Tree Surgeon took me up to East Yorkshire for the weekend in the hope that we might spot some nesting sea birds in the cliffs at Bempton. 

Slightly larger than your average two man tent...

You may already know that car journeys are tricky for me, as they are for so many M.E. sufferers. It isn't just travel sickness that we have to contend with. The stuffy car, the upright seats, the struggle to process the images that blur past the car window, the being unable to have your legs up to avoid feeling faint, the unexpected delays if you hit traffic... It don't think I'll ever be able to accurately convey how it feels for me. And yet sometimes I manage just fine! Truth be told I haven't even considered the journey; I was concentrating solely on the staying in a tent bit! 

After two and half hours in the car we all arrived at the camp site safe and sound. I perched myself on my mobility scooter and watched as the tents were put and secured. I elected myself Chief of Guy Ropes and shuffled my way around securing them into the ground. As strength is not my forte anymore Mr Tree Surgeon did have to follow me round double checking my work.

Even when you can't walk far, you must at least
look the part and wear walking shoes!
Home for the weekend

We were camping with family friends and they were kind enough to lend me one of their fishing bed chairs because the consensus was that my poorly self would not manage a wink of sleep if I was laying on the cold ground with just a roll mat or two for comfort. This bed chair was SO comfy and both nights I slept incredibly well in my shiny new all-purpose sleeping bag. Mr Tree Surgeon was happy enough to slum it on the floor next to me. 

Ominous grey clouds but we avoided the worst of the weather

For some reason it hadn't entered my mind that there might be other campers around. I had it in my head that we could pitch up wherever we liked and even I would be able to walk the short distance to the toilets and shower block. Bless me! In actual fact it was jam-packed and I had to use the car each time I needed a wee. I didn't care what the other campers might think of this until the last morning when, struggling to walk after just waking up, I shuffled from the car to the toilet only for one woman to openly laugh at me right in my face. I wasn't awake enough to explain myself and had to settle for her assuming I was lazy and/or drunk at 8 o'clock in the morning. 

Poorly person essentials
The mobility scooter paid for itself over the course of the weekend. For the first time in almost six years I didn't have to stay behind while everyone went off for a walk. I managed to scoot across bumpy fields right up to the coastal path that allowed you to get the best view of the nesting birds. Everyone helped me clamber over the style and then Mr Walking Stick and I joined everyone for a 'short' walk, flanked on all sides in case I took a tumble and fell off the cliff!!! 

PUFFINS!
My poorly, exhausted legs got me maybe
200 metres along this path to see the birds

I obviously didn't manage all of the walk but it was undoubtedly the longest, loveliest walk I've had in years and years. Everyone was over the moon for me! Not only had I managed to sleep in a tent, I had been able to come along and get some fresh air and stretch my legs. For my parents to see that... It really hit home when my dad commented on how not so long ago I had been unable to walk to the toilet from my dining room bed. What a difference a few years have made. 

Fluffy chicks!
Mr Tree Surgeon and I then mobility scooted back to the car and he drove me round to meet the others at the end of their walk at the RSPB Bempton visitors centre. We had a scoot around there too and I may have had a little happy cry when I looked back to see how far the scooter had allowed me to get. Never would I have managed such a walk. 

RSPB Bempton Cliffs

When it was time to go home Mr Tree Surgeon and I attempted to set down our tent by ourselves, as a practice run for when/if we ever go camping by ourselves. I did it - with a rest in the middle and him doing the hard bits! So it's looking good for future camping adventures. Another thing I never, ever dreamed I'd be able to do again. 

Tuesday, 28 June 2016

On Tuesdays we try to be Chipper

There is no doubt that this a cruel illness. 

For every inch it takes a mile. Every. Single. Time.

Alas it is Tuesday and on Tuesday we search for things to be chipper about. 

Four years ago I had a routine letter from my optician telling me I was due for an eye test. Pretty standard stuff. Yet I was incredibly, incredibly poorly. So much so that a twenty minute eye test would count as my month's exertion. My mum went into the opticians a few times before my appointment(!!!) to explain my circumstances and to let them know it was likely I wouldn't be able to do the whole eye test in one go. We still laugh about her making a nuisance of herself! "Just to let you know (again) that my daughter has an appointment next week with you and she's not very well..."

The appointment was hard and long but we managed it together, going back at a later date to choose my new glasses rather than trying to do it straight after the appointment as you usually would. 

Two years later and I had made enough progress that my mum didn't have to go in several times ahead of time to 'earn' the opticians that I was poorly and had a complex and low energy supply. She made my appointment for me again and escorted me there and back. 

Fast forward to June 2016 and I was able to phone to make my own appointment for the first time since The M.E. Years began. You might be confused about why such a small and trivial detail is worthy of being mentioned, but phone conversations are so hard for me. My brain can't seem to process the conversation very quickly or very well (perhaps without the help of lip reading and body language.) 

Not only did I make my own appointment but I drove myself to it!!!!! Alone!!!! I survived 40 minutes in Specsavers by myself; a huge contrast and improvement from that first appointment four years ago. It was not easy but my health held out long enough for me to shuffle in and out on my own, talk coherently to the staff, sit through the eye test, stand long enough to choose a new pair of glasses (along the lovely team did offer me a chair), and remember my PIN number when I had to pay! 



That my friends made last Tuesday a Chipper Tuesday! 

Thursday, 16 June 2016

Hurdling

M.E. is trying its best to grind me down at the moment. It's not surprising that it's kicking up a fuss. The last six months have possibly been busier than the pervious couple of years! Most notably I went abroad on my first foreign holiday since The M.E. Years began, hosted another Blue Sunday tea party, and then just over a month ago I moved house.

I am somehow managing to keep my spirits up in spite of the ever-present symptoms trampling all over the lovely things I have planned, the books I am trying to read, the television programmes I'd like to watch, the fresh air I'm craving to breathe, the blog drafts I'm hoping to finish. 

With the help of Mr Tree Surgeon and my family, my wobbly legs and I are managing each hurdle as it comes. It's possible that the hallucinations I sometimes experience since my brain decided to malfunction back in 2010 have progressed from visual hallucinations to now include sounds and noises. This does not please me! 

I am also trying to find a solution to what seems to be adrenal fatigue - I go into shock too easily if someone enters a room when I am not expecting them, if there is a volume change on the tele, and countless other silly little things that most people don't even notice. 

It's not all bad. I am being well looked after and cared for. My only 'job' is to concentrate on doing what's best for my muddled up and poorly body. It is starting to all feel quite tiresome but the silver linings are glistening brightly at the edge of each and every dark grey cloud. 


Wednesday, 1 June 2016

My efforts for M.E. Awareness week

Apologies for the delay in sharing this post with you. I actually recovered incredibly quickly after Blue Sunday, feeling back to 'normal' in just four days. It's so wonderful to be able to measure my progress each year. Alas this recovery was somewhat thwarted by my attempts to increase gentle yoga into my daily targets. Five careful minutes of lying on my back and bringing my legs up to my chest left me poorlier than two hours of hosting a tea party. Swings and roundabouts I suppose. My body was doing different and new things. 

Anyway here I am to share with you some photos of my fundraising efforts once again. This was our fourth tea party and we feel it went very smoothly. I think the head count was 72 people in the end and we raised £618.20 in cash on the day! I was so very touched to see so many people there; my oldest friends from school, family friends we've known for well over a decade, university friends from across the country, my wonderful extended family, and even a handful of people who'd seen an advert in the paper. I feel very lucky to have had two GPs, a medical student, and a host of medical professionals at my tea party and hope that the leaflets and information I'd provided helped to shed some light on M.E.

There were other tea parties taking place that day too. Katie, Chloe and Jaime-Leah have all held Blue Sunday tea parties before and yet again they used their precious energy to raise not only money for research and education into M.E, but also vital and accurate awareness. 

Blue Sunday 2016

Once again so many lovely people joined in with the party from the comfort of their own homes. The nature of M.E. means that even just sitting in the company of others can cause sensory overload and the exertion of travelling will likely mean that when you reach your destination you're too unwell to join in with whatever you'd planned to do! The virtual tea party helps make those who have to stay at home feel a part of something. These photos are some of those sent in by fellow sufferers and friends who sat online and watched the tea party through videos and photos I posted on social media.

Let them eat cake!
The Real Deal
A couple of lovely, kind friends made and sent me these!
Leaflets at the ready
A whole family effort
A whole family effort
A whole family effort
A whole family effort
Spot any familiar faces? I thought it might be nice for those attending my tea party to see how the online part of the day worked out in previous years
Can you see why I call him Not-so-little Bro...?
The perfect Blue Sunday cupcakes made by one of my oldest and best friends


In full swing at Tinwell Village Hall
A whole family effort
72 people joined us this year!!!
A tea and cake date!

Enjoying some leftovers as I was too busy to actually eat cake on Blue Sunday!

Friday, 13 May 2016

Last minute preparations - Blue Sunday 2016

I am being extremely sensible and having a couple of enforced rest days in order to give myself the best chance of making it through, and enjoying, the weekend.

Preparations for this year's charity tea party, Blue Sunday, have been going swimmingly. I have been Chief of Delegation and have a small army of bakers at my disposal. It should please you that the baking will not be done by me! I did try to make some scones for the big day but they somehow ended up as pancakes and I felt I couldn't subject you to them afterall. I also have once again roped in the whole family to help set up on the day, distribute tea and coffee, and then wash up afterwards. So yes, I don't actually do very much on the day. Other than take all the glory.

I have been busy over the past couple of months ordering more teapots and milk jugs and sugar bowls, and I'm hoping my last minute order of serviettes and suchlike arrives today! Kitchen roll will have to do if not. I am the Queen of Online Shopping and so I haven't had to spend any energy on traipsing around supermarkets or party shops. Instead it's all being delivered right to my door and the delivery costs are definitely worth it if it means I can save up some more energy for Sunday.

I have a leaflet that I've made myself which hopefully explains a little about the origins of Blue Sunday, gives an insight into life with M.E, and helps dispel some of the unhelpful myths surrounding this illness. If you would like a copy, either for yourself or to hand out at your own tea party, just get in touch via the contact form on the blog and I will email you a copy.

I will be at Tinwell Hall in Stamford between 2-4pm this Sunday 15th May. If you would like to pop in that would be lovely! Please get in touch to let me know though so that I know to look out for you and save you a seat.

I am so touched by all of the cards, presents and messages I'm receiving at the moment to wish me luck for The Big Day. If you would like to make a donation to my JustGiving page you can do so by clicking HERE. All I'd ask for is the price you'd expect to pay for a cup of tea and a slice of cake in a coffee shop.

All I need to do now is find something to wear...preferably with an elasticated waistband!!!!