Are you better now?

Are you better now?

This is every chronically ill patients worst nightmare question.

Please don't expect me to get better... You will only be bitterly disappointed... I know I am.

There are many ways to answer this question. The most polite versions don't come to mind as quickly as the rude, curt and short ones.

For me my mind often wanders to 'well I feel better than 10 minutes ago when I was banging my head against the wall because it felt like someone was using a drill to operate on my head'

I will have ups and downs- hopefully more ups than downs!

I can even hope for periods of remission but I will never be better.

I will tell you where my problems starts with this question.. .A lot of the time that people think I'm 'better' or 'ok' I am suffering silently. People only know there's a problem when I'm really struggling to cope.

Daily I have a plethora of symptoms that would stop most people in their tracks... They stopped me in my tracks for the first few years but you learn to cope, you have to. If you didn't it would stop you from having any life at all.

So when you ask if I'm better, I'm not. But I might be feeling better, still silently coping with exhaustion, tremors, a background pain that won't go away.

I appreciate that this puts you in an awkward position... You are asking out of genuine concern for my well being but I'm sure you can understand my frustration at being asked if I'm better when that is the one thing i will never be.

Living in a box

I'm living in a box.  I'm trapped here, it's not my choice. There is a door but most of the time it's locked. I don't have the key, no one does. There are doctors and scientists looking for it but until they find it I'm trapped.  I can see out of the box, it's all glass, the whole world is out there to be seen in glorious technicolor. But sometimes I can choose to hide the world going by by pressing a button. Sometimes it just hurts too much to see what I can't be part of. Would you want to see that?

The biggest problem is that no one can see the box. They see me but not the box. They want me to do things outside of the box, simple things like walk to the bathroom and take a shower or something big like go out for dinner. They don't understand that I can't get out. They think I don't want to get out... Can't they see me banging the glass screaming and crying because I'm desperate to get out.

Worse still the box sometimes hides me altogether, makes me invisible to every one. It's like the world forgets about me, like I never existed.

But I have my ways of beating the box. I have so much time on my hands stuck in the box that I've remembered how to appreciate the important things in life.

First trick- my wife can get in and out of the box. She can help me when I'm stuck, entertain me and comfort me. She can leave but she can't get me out. She can bring me food and clothes but I can't get out to do these things for myself. Not everyone has someone who can get in and love them.

 I've taken time to actually listen to music, not just chuck on a playlist to listen to for 20minutes on the way to work. I actually listen to the lyrics, explore whole albums rather than just the tracks I like. I used to do this as a teenager, then life took over, work and studies and family.... I know that's the inevitable life of an adult but that has been taken from me so I'm going to make the most of this chance to be 'young' again.

We've started cooking and dieting... I know not a usual combination. We have made some spectacular food, and by we I mean I do what I can when I can... I'm a good head chef bossing and directing! We have read the 101 cook books that were previously decorations in our kitchen. Our latest thing is a worldwide food challenge, learning more about cuisines from around the world.  Oh and I'm 3&1/2 stone lighter than I was! Not bad...take that box!

I take time to talk to and see friends when the box opens the door. But I'll let you into a secret... I've got wifi in my box and thanks to FaceTime and skype people can get in the box with me and give me a virtual hug! Never take your friends for granted... And by that I mean your real friends. The ones who for some reason are not controlled by the box. They never forget that you exist, always understand that you want to be out of the box when you can't get out and wait patiently for the door to open.

Nature is beautiful.... Don't forget that. Yes an I pad is pretty spectacular, I phones are bloody marvellous and can do everything, the latest series of the latest good thing is amazing too... But stop and look up. Look at the rain on a window pane, look at the sun setting on your way home. Look at how beautiful the people around you are. Actually look at them. Isn't it amazing how beautifully unique we all are. It's the small things... I take more photos now too. Photos are memories. Memories are priceless. Memories are actually all we have in the end, it's all people have of us when we are gone... Make good ones.

I'm trying so hard to escape the box, I'm making the best of my time while I'm trapped in the box and on the days the door opens... I get out and I live. I'm making memories...

#makememories #fighting #winning

getting a seat...

I don't like being disabled. I want to hide it from the world and I compensate and adjust to make my illness as invisible as possible.  I want to be ‘normal’ just like everybody else. I’m not too sure who I am kidding!

Then there are those other times when you wish you had a big sign on your head that said 'I'm disabled’.  Mainly when life is so hard that you need something or someone to help you out.

My best example of this is public transport. I don't drive so I am often found on public transport all over the UK. I am a very competent and confident traveller but one thing causes me problems. The ‘priority seating’... Or lack of it!

Most regularly, at the moment, I travel on the Nottingham tram network (NET). There are 6 priority seats on this service and two 'bays' for wheelchair users. They even identify the best door to use on their platforms with a logo of a wheelchair.  Probably the best disabled access local transport service I have used.

My journey is 25 minutes long and I usually can't stand on a 'wobbly' tram for that long. So I sit in the priority seats. I feel that I am justified in doing so. I am pretty sure that not everybody who chooses to sit there is as justified though. This is fine on a quiet journey, but on a busy service where there are no other seats available for those less able to stand this can be an issue.

I have seen some disgusting examples of rudeness. I often see ladies with prams turn the other way to avoid eye contact with wheelchair users joining the tram so that they don’t have to move to make way for the wheelchair.

I have been on the receiving end of people who have made assumptions about me. Sadly, older people don’t come out of my next two examples well… this is not my view on all old people.

I was sat on the ‘please give up these seats for those less able to stand’ seats at the front of a bus… when a number of ‘old ladies’ got on. Each and every one of them tutted as they walked past me. They then continued to talk (loudly) about me, questioning why was I sitting in a seat for the elderly (it’s not just for the elderly), for the entire journey and how important these seats are to them. Can I just say that if any of these ladies was clearly struggling to walk further than the seats I was on I would have moved. They were all however carrying more shopping bags that I could have managed.  As I stood up and they saw for certain I was ‘not disabled’ their commentary carried on, so I turned and politely asked them to consider that not all physical disabilities can be seen.  They were quiet. I left.  I hope they thought about what I said and treated others with more respect.

On another occasion a lady sat behind me and again tutted at my presence on the ‘please give up these seats for those less able to stand’ seats. I can’t remember why but I was in a bad mood on this occasion, so I took my disabled pass out of my pocket and showed it to her, letting her know I was entitled to sit here her assuming that this would be enough for her to leave me be. Instead, she looked me up and down and said ‘I didn’t realise being fat was a disability now’. I was devastated. I don’t hide the fact that 8 years of treatment, being housebound and being miserable has made me put on a lot of weight (that I am currently in the process of losing! 21kg (46lb) lost in 14 weeks… round of applause for Katie please!). As you can imagine, this incident not only ruined my day but it added to already escalating self-esteem and depression problems.

But here lies my dilemma... our illnesses are hidden by their very nature and where there are more visible issues If I try to hide them I'm sure others do too. When I feel that I need a seat and want to utilise one of the priority seats, how do I politely ask people for a priority seat if I don't know if they need the seat too?!?!

I'm quite a shy person, but I know that if someone asked me for my priority seat I would go one of two ways. Bite their head off saying please don't assume I'm not disabled because you don't see it... Or I would get up and stand at the detriment of my own health for the rest of my journey to avoid embarrassment.

I often need a seat on a busy train, bus or tram, but I am yet to ask anyone to let me sit down. I don’t know if I ever will. My disability is on the whole hidden, but so are many other peoples. I don’t want to insult anyone.

If you are reading this and you are not disabled, please, where you can, think about who might need the seats that are allocated for those less able to stand and be willing to give it up when asked.