Wednesday, 25 February 2015

Dateable?

Not to blow my own trumpet but I think it's a huge deal and very brave that I am letting someone new into my life. Someone who will see the good, the bad and the ugly because it is impossible to hide. I don't have the energy to pretend and I'm not sure I should have to even if I could. This is me now, whether I like it or not. Whether the people I date like it or not. That's a tough one to face though. What if they run a mile because of the huge impact my health has on everything. I guess if they do, they do. What will be, will be. Look at me being all cool, calm and collected...

I've been lucky. I have met up with only one man I 'met online' and we are still dating three months later. So, as it currently stands, I can't give you any gossip about M.E. scaring anyone off or give juicy details about terrible dating disasters in general.

I'm trying hard not to undersell myself by telling him "You're making a huge compromise physically." Mentally and emotionally I'm pretty sound. Physically (and cognitively) not so much.  

I am actually (and very surprisingly) getting on well with spending so much time with someone. That was my biggest concern - that just having someone sitting next to me on my poorlier days would be classed as overstimulation by my broken brain. It's because I've made improvement since the latter part of 2014 that I'm coping with that bit, but also because I feel comfortable with him. He's kind of cool. 

I am learning to trust that he really is okay with me not being able to do so many things. It's very frustrating because I feel like the Old Anna would be so much more of a catch! She was adventurous and outdoorsy and a whole host of other things that the M.E. Anna cannot yet be. I've been told I am not to apologise when I'm experiencing a crash and, for example, need to lie on the floor (yes this has really happened! Luckily not on our first date though!) I'm learning that a lot of the issues I'd imagined that would surface about M.E. are actually my issues, rather than those of the person I am dating. 

I'm trying not to let it frustrate me that I can't do the basics like cook for him. (That's probably for the best though as I am TERRIBLE in the kitchen.) I just feel a little bit useless. I would do so much more if I could. It's never that I don't want to. I've tried to be honest, yet keep the balance between informing and moaning. 

I have explained that recovering from M.E. is essentially my full-time job. I will therefore not be able to do everything and anything despite not having any plans. Rest needs to be accommodated for. A lot. I won't be able to see him even though I might be free. He seems to take it all in his stride...

I'll keep you updated. 

(But! If one more person says that my recent improvement and progress is down to the fact I'm dating I may throw all of my toys out of the pram! My argument is that without improvement I would not be able to date someone in the first place!)

Related posts:


Wednesday, 18 February 2015

Blue Sunday 2015

It may only be the middle of February but in true slow lane style I've had to start early if I want to stand any chance of getting everything done before May!

In 2013 (I think) I decided I wanted to do something to mark International ME Awareness week. I was (and am) obviously too ill to take part in a marathon or sponsored bike ride, so I settled on hosting a tea party for my friends and family where all anyone had to donate was the price they'd expect to pay for tea and cake in a coffee shop. 

This will be my third Blue Sunday event and for the first time I am inviting you not just to join me online, but to call in to the 'real life' event if you so wish (and you're able to make the journey!) There is a Facebook Event page already set up if anyone wants to take a look.

Last year I set myself a £100 fundraising target. We smashed that by raising nearly £900. So this year I've upped it to a whole £1000. I've had quite a few messages from people asking if they can host their own Blue Sunday at home where they can invite their own friends and family round to drink tea and eat cake. Yes yes yes! Please do. You can set up your own fundraising page via my Blue Sunday team page HERE. Then click Join Team...



Why The ME Association?

Choosing a charity to support is a very personal choice. When I was first ill their website was a source of great comfort and countless information. It made me feel like I mattered; that I was, infact, not alone at all. I felt I was a part of a wider community. While we wait for accurate treatments and a cure, I believe the support and guidance offered by The ME Association to sufferers is second to none. 

The MEA have made me feel like I matter. They have never badgered me to fundraise for them as other ME charities have.


Why Blue?

Blue is the awareness colour for M.E. I will once again be making and sending out blue awareness ribbons to anyone wanting one.


Please get in touch if you have any questions... And let me know in advance if you'd like to join me on the day - I'm not so good with surprises! 

Wednesday, 11 February 2015

Behind the smile

Over the last four years I have made incredible progress and I am finally starting to regain some independence. This is wonderful! Alas, this improvement is causing confusion. I am NOT recovered. For a start, I started writing this post in December and am only now managing to finish it off...

I am a little bit better though, or at least I'm choosing to believe that. Perhaps I don't do anyone any favours because, when asked how I am I will never respond with a list of symptoms. Instead I say "not too bad" or "I'm okay" because I truly believe that I am. My 'okay' and yours are just worlds apart.

It wouldn't be healthy to dwell on the awfulness that I experience everyday. Luckily for me it is in my nature to seek out the good things. But perhaps, just for today, I need to be honest with you about what is going on behind my smile...

Behind the smile (photo taken in Decemeber 2014 when I started working on this post. Each one takes a fair while...


So at this precise moment in time I have intense pain in my knees. My left knee cap feels like someone is scraping something along it. My eyes are so heavy they are only half open. I have a headache. There is a shooting pain going up with left thigh every now and then. My blood feels cold. I'm pretty sure I can actually feel it rushing through my veins. I am dizzy. The room is spinning. I cannot see as 'well' as I usually can. Everything is that little bit more fuzzy and out of focus. My throat is dry. I feel like I can't get enough air into my lungs. There is the feeling that a load of ants are crawling around at the front of my skull. I have tinnitus. My hands and feet are freezing. My face is boiling. My heart beat is making my body move to its rhythm. I have palpitations here and there. I feel nauseous and have no appetite...but if I don't eat I will feel even weaker than I already do. I feel like the muscles around my ribs are being pulled off the bone. The fatigue...the only way to describe it is to say it's ridiculous! I feel anxious because I am home alone. I don't really know why. Perhaps it's a comfort thing. Perhaps it's that I've spent days before now sitting on the floor in the hall waiting for someone to come home because I've run out of energy on my way to the bathroom... I'm not sure I could get to the front door if someone knocked on it. I can walk but my legs feel as if they are full of concrete.

This is four years in. This is after immense improvement. All this and I have trained myself not to panic; to just be. I have to stay as relaxed as possible. I've got used to this now. I don't feel sad or numb. It's actually a content day, like the majority of the others. Today there will be no shower or getting my own lunch or leaving the house or catching up with TV. 

So I mean it when I say I cannot yet join you on nights out or stay for more than a few hours at gatherings. I can't join you at the gym. I cannot go out for walks or days of shopping. I cannot manage weekends away where we all share hotel rooms. Sadly I still have to be regimented with myself about what I do. Trust me when I say that that is the hardest thing I've ever had to do. It is never that I don't want to do something. (Unless it is!) It is that I can't. Not yet. That is not me doing negative. Save yourself the time and energy of telling me to think positive...

We just have to be patient and hope that things move forward that little bit more. There may well be a relapse and there will most certainly be setbacks, where for a few weeks I will be back to near the beginning. Sadly that is the nature of M.E. And it is never my fault. Please, if you do anything, don't make me feel like it is.  To question "have you overdone it?" is hurtful. It implies that I am at fault somehow. I am still learning. It still baffles me that to watch TV at the same time as sending an email can be interpreted by my brain as overdoing things.

There will always be post exertional malaise (quite like having a hangover after a big night of drinking, except we suffer after any kind of exertion or activity) because that is essentially what makes M.E. what it is. For most things I do there will be payback. 
This isn't being published to make you worry about me. Just as when I started M.E. myself and I in 2012, it is essentially to help you understand why I seem to have turned into an anti-social hermit who won't even answer the phone when you call. 

I have come to accept that this is how life has to be for me. You need to do the same. Hard as it may be, we have to let the Old Anna go...