I used to fit in. I used to be able to go about my daily business go to work, ride the bus, go shopping and such as just another face in the crowd. It seemed that you were almost invisible to those around you who didn't know you, strangers just passed by without a second glance.
Now I stick out! I am different. People will look, do a double take or some even ask questions unable to get their head round the fact this is a lifelong condition. Everyone wants to know your business Nothing is private. The government has whipped up a storm about all these disabled benefit scroungers and now nobody believes anything. You're a fraud, a cheat, a scrounger, too young to be like that, in it for the money are just many of the things they say.
The crowd can turn into the mob. People can get abusive towards those who they see as easy targets. The disabled. The mob shout, swear, question as if they have been made judge, jury and executioner. You see it's OK for them to do that in their view, I mean there's all this talk about these scroungers!
The so called scrounger the person who not only has to suffer with their debilitating condition but then has to tell the world and his wife the most intimate details about themselves. This getting disability money lark isn't all that easy let me tell you. You have to basically humiliate yourself in telling complete strangers just how much you suffer and how you need help only for them to basically turn round and call you a liar! So then you go into even further detail for someone else to look at your case and so it continues until you have told so many people about what's going on with you and filling out that many forms all for them to call you a liar!
The disabled person has to fight constantly battle against the cuts. Of course it's easy they have all the time in the world to fill in their forms I hear you say. Not so. Real people who are ill struggle with their forms and cannot do them or cannot get them done to the specific wording despite their debilitating conditions. They often get less than they should or give up because they are too weak to fight. Too busy battling their constant health struggles. But fight we must!
So I have begun my fight. I have been rejected. No DLA. Basically everything I put in my claim was discounted. I have now asked for what's known as a reconsideration and I am in the process of trying to collect my evidence. The fight is draining but I will do it! I am in this pain, I do have these medical conditions wrong with me and they do impact my life!
When you're disabled your immediately labelled. Labels become a bit like a collection you just seem to keep getting more and more. The current collection that has recently been building up is that of my illness labels. I have now been labelled with Chronic fatigue syndrome/ME and depression. More labels in turn mean more pills. I have started my new so called happy pills and they make me feel sick. Thank goodness I am not on a higher dose. I have some extra pain pills aka 'smarties' well actually co-codamol but they don't really do much for me well except give me constipation. It's supposed to help with the pains in my feet for which I am now seeing Podiatry (foot people) for. Apparently I am walking funny on my feet on the outsides. I have also gained some new insoles to add to my equipment collection. I have also begun filling up my diary again but only with all these new appointments.
I have been having chest pains which they thought was my liver or gall bladder so I had scans on them but they seemed fine but I will have to go back and see the GP. Personally I think I know what it is dr Google says it's costochodritus and as it's another thing common with people with fibro I am likely to agree. Also I am trying to achieve my all time top referral high score badge for the most departments referred to within the space of 3 years. I am now being referred to a specialist ME clinic. I think I am at 10/11 different specialities now. Joking aside half the time it feels like I am falling apart and I keep being passed from clinic to clinic as each one can only sort a small bit and not look at bigger picture!
I think there are a lot of untold truths when it comes to disability. Things that we don't speak about as we are too embarrassed to tell. Often people ask but they don't really want to hear the answer. Not really. Those who are not disabled live in blissful ignorance of the struggles people face each day. I have been thinking a lot about this lately. I think people often ask 'how are you' without really wanting to know the answer. People haven't seen you for months, you quite clearly look ill and yet when you say fine or something along those lines it seems to be what they want to hear and quickly move on.
This therefore creates things about illness that are rarely spoken about. Take for instance depression - lots of people get it yet how many people talk about it? Often the worst thing is for a person to become lonely and excluded. Illness is a part of someone with a disability, it is their life. I am not saying all you should ever talk about is that but it is a factor and if you want to be friends with the real person then you have to hear about their illness/disability too.
If you really want to try and understand someone with chronic pain try reading this article:
However, the best person to speak to is the person who it affects!
This is my word when I am asked how I am. It's generally used in combination with other words in reply to the question how are you. 'I'm ok just plodding along' tends to be the most well used. The funny thing is I don't plod I hobble with either my crutches or my walking stick! Maybe even more of a shuffle. Never a plod. But yet here I am uttering these words. I tend to think as it's I know people don't really want to know so I give that answer. Well all except all the old ladies wherever I am. It's like bees round honey they'll chat all day and tell you everything. I have figured now it's just that they too need someone to talk to. It's as if they have excepted you into their club. I now look upon their chats as friendly and join in... today I heard all about foot problems and another told me all about why she was going for a blood test. They just need someone to listen to them and they probably haven't got anyone else.
In the middle of an ocean drifts a make shift boat. The boat is half battered from going through some major storms. Half battered but still afloat. The island it launched from is still in view in the distance but you can only just make out it's shape on the horizon.
As if recharging her batteries the boat gently drifts in her new direction. The map long since gone, lost in some storm or another but a map doesn't seem to be as important to the captain as it once was. She has learn't that a map is useless in all the storms and you just have to let the tide guide you. You can't fight the tide.
The boat launched without warning but had what seemed like a good crew on board. However, as the seas got rough and their interests changed most abandoned ship. The boat has picked up some new crew members along the way, with insider knowledge about this boat. They have also helped with some of the repairs on the boat. Yet still the boat drifts along expecting another storm whilst still being battered from the last never being able to fully repair itself.
If I was to be asked how I feel honestly right at this moment I would answer that I feel like I am drifting. I feel like I the captain of that boat heading into unknown territory. Leaving life as I knew it far behind. Disability/ illness launched the boat I was never planning on leaving port! There are so many time when you feel alone, abandoned by crew mates so called friends and when trying to concentrate on keeping your boat afloat it can seem catastrophic. Over time you realise that the so called crew members were just taking a free ride, using your provisions and were ending up costing you far far more than you ever would get back. Being on the ship can be isolating, depressing, mind boggling and frustrating to name but a few of the many emotions I have experience and am experiencing. Don't forget all good boats carry stuff for emergencies, when you need to don't be afraid to let off that flare and ask for help!