|Apparently people with "invisible" disabilities are going to be allowed to apply for Blue Badges so they get the same rights as those of us with "visible" disabilities when it comes to parking, etc.|
There is only one minor problem with this as far as I can see (and I am using the word "see" for a very specific reason which I will explain in a minute). It is very rare for physical disabilities and poor Mental Health not to be connected in some way. After all, you cannot divorce the physical ability of someone from their brain and their Mental Health because they are both part of the same person. There are even some physical illnesses which can actually manifest themselves as a sign of poor Mental Health (I am talking about not wanting to mix with people if you are having difficulty breathing, etc).
On the flip side to that - there are certain Mental Health conditions which definitely have physical symptoms attached to them. Anxiety for one - an anxiety attack or a panic attack are both labelled as Mental Health issues but they both have very real physical symptoms.
There is another side to this which I find fascinating. Remember I told you I was using the word "see" for a specific reason???
My friend, Julian Harrison, has got depression and OCD (Obsessive Compulsive Disorder). He also wears glasses.
I have had Depression in the past. I also wear glasses.
(I bet you are now wondering where the Hell I am going with this - and whether or not I should have run this past another friend of mine who happens to be a retired Clinical Psychologist??? Don't worry - Julian has already proved the theory I am going to share with you.)
The connection I want you to focus on is the fact that Julian and I both wear glasses. Why??? Well, we have both been known to do something which most people find strange. And (as illustrated by an episode of "Would I Lie To You?" when this was discussed - the reason most people would give for doing it is actually related to sight and not Mental Health.
What is this thing that Julian and I have both been known to do??? And what are our reasons for doing it???
Simple, if we are going to a strange place (in my case this is particularly when I have to go somewhere strange in the dark on my own) we will both do a dry run before we have to do the journey for real.
Julian will do it because of his OCD and I will do it because of my sight (I have useless night vision). Failure to do this can actually make me panic so much about leaving the event or venue after whatever I am attending has finished that I will not enjoy the event. (You try wandering around in the dark with multicoloured spots in front of your eyes, as well as being blinded by the headlights of passing traffic, and see how happy you feel. It is much worse when you are trying to work out which bus you need to stop so you can get home.)
We have to be very careful about trying to treat Mental Health difficulties as totally separate from physical disabilities. Especially when you realise that things like Depression can be a "side-effect" of certain physical disabilities (especially when the disability in question can result in someone being bullied about it - or worse - when the disability renders someone housebound with the associated risk of loneliness).
The thing I find most interesting is that there is not much discussion regarding the similarities between things like Depression and being seriously short-sighted.
Allow me to explain - when people are in a severe depressive episode they cut off all contact with people. When I hit my "performing seal" limit (as in - I just want to go back to being myself without having to hide my difficulties) the first thing I will do it tidy myself into a corner and not speak to anyone. Basically, I will go into "Mental Energy Conservation Mode". When I hit that stage I would strongly advise you to leave me alone unless you really wish to be faced with an inconsolable blubbering wreck who probably hates herself more than she hates anyone else.
The thing I have never understood is why the Disabled (be it physical or those with poor Mental Health) are always forced by the "able-bodied" section of society to pretend we are something we are not (and - in most cases - will never be) or we are thought of as some kind of Superhero when we somehow manage to find a way to compete with the "able-bodied" on their terms.
The whole debate about Disabilities (visible and invisible) has been hijacked by the wrong people. The "able-bodied" will never have a clue about what it is truly like to be me, for example (unless of course something happens to deprive them of the ability to see clearly any further than three centimetres from the end of their nose without glasses - and that is before you add the other "fun" challenges to the mix). The "able-bodied" should - of course - join us in our fight for true recognition and representation (otherwise we are just shouting into a hurricane) but us people with true experience of poor Mental Health and physical disabilities should be encouraged to tell the stories of our experiences without the able-bodied telling us we are making it up or - worse - telling us that our experiences don't matter.
I would like to finish this by telling you why I admire the BBC Security Correspondent (or Security Editor), Frank Gardner. For those of you who don't know who I am talking about - he is the journalist who got shot and ended up in a wheelchair as a result. The reason I admire him is because he uses his journalistic experience (and Social Media) to highlight the treatment that wheelchair users are subjected to when they are attempting to leave an aircraft (among other situations). He doesn't preach or play the "woe is me" card. He just sayashEErs he sees it. Having experienced both "worlds" he can shine a torch on issues so the "able-bodied" get a taste of how difficult life can be for the disabled in a way that the "able-bodied" can understand.
If only I could do the same about sight problems.
|Did you know I am a member of one of those "Minority Communities" which occasionally get mentioned on the news??? Actually - at the last count I think I found I could squeeze myself into at least two of those communities - being Disabled and the daughter of at least one (depending on which country I am currently standing in) immigrant. Well, both my parents did live in each other's native country at some point in their lives, not forgetting that I am a lot closer to blind than 20/20 vision without my glasses. Oh - and I am a human of the female species.|
I have several problems with the arguments regarding recognition and representation of the "Minority Communities". The biggest one being as follows - the people who could help us the most (let's call them the "Majority Communities" are not involved in any way shape or form.
We will only get true representation and recognition when the "Majority Communities" actually understand the challenges we face on a day to day basis. This is not helped by different "Minority Communities" appearing to be directly fighting against each other for the same thing.
Allow me to give you an example. As someone who is Registered Partially Sighted I am covered by the Equalities Act. However, there is one occasion where the Equalities Act doesn't quite do its job (and I am not talking about the purchase and wearing of glasses either - even though that is not covered by the Act). In a game of "Legal Top Trumps" the Religious Discrimination Act actually works against me (and can put me in danger). A Muslim lady dressed head to foot in black with a niqab isn't exactly the easiest person for me to see and distinguish from the background in most lighting conditions. I have seriously mistaken some of them for traffic bollards, fast-moving loose Wheelie Bins, etc. (In fact, I am not the worst at that - I spoke to one Muslim lady a few years ago who ran her neighbour over because she couldn't see her in the dark. The lady who got run over was next seen wearing reflective tape on her outfit.) But - if I point out my difficulties to a lady dressed in that way they can quite legally and rightfully say that they are free to observe their religion by dressing exactly as they wish. I have no problems with this. All I would like is for anyone who chooses to dress head to foot in black to wear a brightly coloured item of clothing - even if it is only a scarf.
The next question we have to deal with is the definition of "Recognition" we are aiming for. Are we aiming for a situation where members of the "Minority Communities" are recognised as existing and useful members of Society? Or are we aiming for a situation where the individual members actually receive recognition for the fact that we have to work 20 times harder than the "Majority Communities" just to get to the same position in life???
I am not going to play the game where the different "Minority Communities" fight to see which community is the worst off when it comes to recognition and respect from the Majority. Every single "Minority Community" faces its own challenges. However, I fail to see why we cannot all come together and work as a group. Last week I was involved in a debate on Teitter which started out as a debate about the representation of BAME (Black and Minority Ethnic) people in the Police. This quickly got changed to "the representation of Minorities in the Police" thanks to me and a few others pointing out that there is not that much difference between the BAME, the LGBT, the Disabled, those with poor Mental Health, etc. Our main problem is that none of the "Minority Communities" are adequately represented in the Police. I don't know what it is like to be black or a Muslim or a member of the LGBT community. However, I do know what it is like to feel discriminated against because of something I cannot change about myself.
The representation issue is a bit of a double-edged sword as far as I am concerned. This is particularly applicable to the Mainstream Media. This may shock you but I did at one time want to be a proper qualified journalist with a Mainstream organisation. That was until I realised that I would be far better blogging and putting my viewpoint across on here. At least I have got a voice on here and I can say what I want (as long as it is within legal parameters and doesn't offend anyone).
The Mainstream Media seem to have two attitudes towards the "Minority Communities". They decide that they are worthy of almost being treated like the "Majority Community" - as in - being given a "proper" job (as a reporter, etc) but (a) not paying them the correct rate for their work and (b) not letting them anchor the major news programmes. (I am thinking about journalist who I suspect is either blind or Partially Sighted who works for the BBC who I would love to see anchor the News at 6.) Or they use them to fill quotas and make up the numbears. Apparently not caring if they truly fit the part they have been given. I have to admit that I stopped watching the panel type quiz shows "Mock The Week" and "QI" since the BBC brought the quotas on women in because I found the women more offensive than the men.
I am a firm believer in getting somewhere on merit. The fact that I have personal experience of the difference in the rules that Disabled people are subjected to in order to reach the saw level as "able-bodied" people just makes me more angry when I hear about quotas and things like "women only shortlists", etc . Don't the people who come up with these crazy ideas realise they are making the problem worse not better. And this is coming from someone who was never sure if they were invited to attend job interviews on my own merit or because the organisation had a quota of Disabled people to interview.
Guess what guys and girls??? I think I might have proven I am reasonably intelligent??? Yes - there are certain things I cannot and will never be able to do due to my sight. However, I have got a lot more going for me than that. I am creative. I can communicate in two recognised languages. I have a very good memory. I am polite, friendly, respectful. I am adaptable (and I don't just mean in the context of the question you are asked about that subject in a job interview). I will try my hardest to get things done (OK so my methods may not exactly be the most conventional you have ever come across sometimes bUT at least they are legal).
Don't judge me on what makes me different from you - judge me on what makes me the same as you.
|I am going to be honest with you (and if you know me personally you will know this already) I hate compliments. Sure - If I see you wearing a nice top or something I will compliment you on it (whether or not we have ever met before). But try doing the same to me and I just get embarrassed. If you find a reason to compliment me on what I am wearing you might have more success (that means that I have actually managed to coordinate my outfit instead of just throwing any combination of clothes onto my skeleton and calling myself dressed.)|
Calling me "Brave" is the thing I hate the most. I know people who I consider to be a lot braver than me. What is so brave about going about your daily life whilst going through treatment for cancer??? Nobody told me I was "brave" when I was being bullied at school, or when I was teaching myself how to cope with the teaching methods, or when I was "socially trained" to act like everyone else in order to fit in (even when some of the things I had to learn were the exact opposite of what I was most comfortable doing). That was when I felt I was being brave.
The other word - which I am slightly more comfortable with is "inspirational". However, not for the reason you might mean. I don't consider myself to be inspirational but I have seen a way in which I have inspired people. You are currently reading it.
There have been some rather curious coincidences involving s a few of my posts on here. I got my job with Simple Solutions as an indirect result of this blog. I have also found myself being thought of as an "expert" in blogging by someone who I truly admire in the field of Community Media. I also managed to accidentally educate a few people about the challenges I face due to Photophobia as a result of a video and blog post I put up about it (being told by second year Journalism students that that particular blog post was interesting really made me feel good). However, the biggest and most recent coincidence actually involves my last blog post.
I very rarely discuss ideas for blog posts with anyone (unless I have a specific person in mind who I would either like to collaborate with or whose photographs I would like to use).The last blog post was a little different because the idea came to me during a Twitter conversation with one of my friends. Then put the idea on Facebook and asked if anybody would be interested in reading it. Another friend offered to send the link to someone they knew who might actually be able to do something about the issues I highlighted. So I typed the blog post and posted it. I didn't think anything else would come of it. Until yesterday that is. I went to the Social Media Cafe (the first time since I came out of hospital) and met the friend who offered to pass the link on. Whilst we were there a mutual friend turned up and - when she heard about the blog post (and the associated story) she offered to pass the link on to her contacts.
Now - that is the sort of "inspirational" I like being. It involves me using my talent to highlight something which can be used to help or educate other people. It is even better when other people decide to join in my efforts.
You could say I am a "solo flyer" (even though I hate flying with a passion you can only dream of). What I mean is - I am happiest doing things on my own without distractions. But I am very pleased when someone either uses something I have done as a springboard for one of their projects or decides to do something to make the world a better place as a result of something I have written about on here.
Of course, I love showcasing the work and projects of my talented friends on here. In fact, had it not been for a couple of very good friends of mine reading a review I had written of a gig one of them had done (on the original inkyworld) and telling me how much they liked it - and that they both think I am a good writer - you certainly would not be giving yourself potential eyestrain and a potential headache by reading this. Inkyworld only exists thanks to people who tell me they like reading my ramblings. So have a BIG THANK YOU HUG for your support.
|Just over a year and a month ago I was diagnosed with Metastatic breast cancer and Heart Failure. I was also told it was terminal (actually they said "Palliative care" which means the same thing).|
Whilst most of my interaction with the Medical Professionals subsequent to the diagnoses has been faultless there have been times when I wanted to ask them to treat me as a human instead of a caseload.
Some of what I am going to say in this blog post is personal to me and my situation but other things are what I feel should be done differently for everyone's benefit.
The funny thing about a diagnosis of cancer is the fact that - if you are like me - it doesn't quite come in the way you expect. I am a bit like a computer. OK so my "logic" function may not operate in the same way as everyone else but I still try to get information in some sort of order.
I remember when I was told it was probably cancer. I remember this because the first thing I was told would give anybody a clear indication of exactly what we were dealing with was actually the last thing to hapoha before I was discharged from Glenfield Hospital in June last year - a biopsy.
When it became clear that not only was it cancer but it had spread the Doctors took my first choice away from me. I was trying to deal with the news in my own way (at that point I was actually working on the - sensible due to what had happened to my Mum in 2007 - that I would be dead within a month). What I did not need at that point was to have a continuous reminder of the seriousness of my situation as a result of having Palliative Care nurses set on me without my permission. They may well exist to make life easier for people like me but I just ended up feeling more and more stressed out when they appeared. In the end I actually told them not to contact me again after I had been discharged.
The biopsy turned out to be a frightening situation for me. Approach me with a needle or a bladed instrument and I had better be able to understand why you are doing this. The Dr who did the first biopsy when I was still an inpatient might as well have been speaking in Urdu for all I understood of what she said to me!!! The clarification came in the form of a letter I saw when I got home two days later.
The next person I saw was the Oncologist. This lady is a bit "academic" for my tastes. She also threw another possibility into the mix. I didn't realise - until I saw her - that being half-Dutch (and taller than average) was a possible symptom of Madden Syndrome. Stupid me thought it was a symptom of having a Dutch Mum and an English Dad. Apparently this syndrome isn't life-threatening (even though I have actually got the associated heart and sight problems anyway).
What she did tell me - which no other Medical Professional deemed it worthwhile to tell me was an expected expiry date. Now I could get some form of a plan together for how to deal with it.
During that first stint in hospital I realised when I was starting to feel more like myself. It was the second time when someone called me "Caroline" and they were politely but firmly informed that I am "Ineke" (Caroline is my middle name).
The next thing which told me that things weren't as bad as I thought they were was when I was given the first error-filled story mixup. My brain files information very quickly - particularly if the information relates to me in some way. I didn't like the fact that one Dr had specifically stated one thing about some medication I was being prescribed only for another Dr to tell me a different story. (Another thing which drove me almost literally up the nearest wall was their use of Medical abbreviations - I know I was born with a hole in my heart and I know the original hole was repaired in 1974. I have yet to get the abbreviation for this lodged in my brain.)
Then we had the Heart Failure Nurse. Both of these were nice and caring.
The Cardiologist I originally saw was a bit of an odd character. He was old-fashioned. I mean that as a compliment. No abbreviations, no "paint a bright picture where none should exist" but give it to me straight.
The next time I was admitted to Glenfield was directly from Cardiology appointment. I was experiencing severe breathing problems. It turned out that one of my lungs appeared to have sprung a leak in it letting fluid build up in it. After that had been drained I was discharged only to return within 24 hours for readmission - due to a suspected asthma attack - which would probably have been avoided if they had read their own Discharge letter and fitted me up with the inhalers mentioned in it prior to letting me leave hospital.
My next admission to Glenfield Hospital showed me how well the hospitals in Leicester can work together when they choose to. I had had a CT Scan at Leicester General Hospital the previous day (ordered by the Oncologist at Leicester Royal Infirmary). I was admitted from my Pleural Effusion appointment at Glenfield Hospital based on that scan because my other lung had sprung a leak.
In the middle of all this I was having to deal with running around after medication (and - in one instance - having to convince my GP's surgery that the Oncologist had in fact prescribed one medication simply because it wasn't stated explicitly in black and white on the letter). The stress caused by this isn't much good for anyone - never mind someone who has got multiple health conditions.
My most recent admission was - in some ways - the hardest for me to cope with because I ended up feeling all control of my situation had been taken away from me. It still hurts though I have been discharged for a couple of weeks.
I was hoping that Leicester Royal Infirmary and Glenfield Hospital were going to get together and make sure I was in fact suitable for Chemo (I had been told when the escapade started I wasn't due to lack of reserves in my heart as well as capacity issues. Apparently a dose of pneumonia and inflammation in the bottom of your lungs gets rid of any ideas you may have about coordination between Departments (never mind hospitals). It also seems to get rid of coordination between different sections of the same Department as I found out when I went for my second chemo session.
The next "fun" bit was being informed that I was going to get a home oxygen supply. Now, there is nothing wrong with it in itself. The problem is - it has to be set up before the patient arrives home so it needs someone to be present when they set it up. What happens when the patient hasn't got anyone they can call on quickly to go to their house and be trained? More to the point, why can't they just train the patient???
I think I might actually have got a system worked out for the swapping of the Walking Tanks now.
I am aware that I am merely the patient but surely I should be allowed to feel as though I am at the centre of the decision-making process when it comes to my care??? It is not funny - feeling like a passenger in your own life as you career towards your death.
I purposely omitted to mention the fact that a disconnection between me and the oxygen supply point on the wall near my bed wasn't spotted until a few hours after the nebuliser had been disconnected during my last admission. It was only picked up when my sats seemed alarmingly low during an early morning observations check.Luckily that was a one off occurrence.
I cannot fault the Health Care Assistants at either Glenfield Hospital or the Leicester Royal Infirmary. Nor can I really fault the nurses at either hospital. Some of the Doctors - however - need to remember that patients are people too with their own ideas and experience of their condition. I feel happiest when I am allowed to discuss things and ask questions in my own time and way.
|Hello! Do you remember me??? I have vague memories of posting blogs posts on here what seems like in the Prehistoric period.|
I suppose I had better attempt to explain what has been going on since I last blogged on here. I say "attempt to explain" because - to be perfectly honest - my head has yet to stop spinning enough to understand some of it myself.
In the beginning of June I had a lovely few days in Holland - a great time of rest and relaxation.
Then the wheels came off big time.
I had been put on two different types of tablet - Letrozole and another one beginning with R (the name of which I cannot remember) and thought I was going to go through the cycles of the one beginning with R without any problems.
My cadaver had other ideas. It protested!!! Luckily it kept its thoughts to itself until after I got back off holiday otherwise I would have been really upset. I had really been fighting to go to Holland anyway (a small matter of a lung drain wouldn't stop me).
Anyway - as I said - when I got back from Holland my first appointment with the Oncologist wasn't quite what I had hoped it would be. My white blood cell count was lower than the Medical Professionals were totally happy with. So the next cycle was postponed (indefinitely as it later turned out). I had to repeat the blood test and go back to the Oncologist the following week for another check.
When I followed these instructions I was told the white blood cell count was still low and ordered to ring the Emergency number (which I had not yet been given) if I ended up having symptoms of anything like a cold.
Well, that was on the Tuesday. The Thursday of the same week saw me going round to my neighbour to ask them to ring an ambulance for me and being admitted into the Leicester Royal Infirmary via a "Blue Light run". Yes - I was officially an Emergency Situation.
It turned out (after Leicester Royal Infirmary winning the argument between themselves and Glenfield Hospital) that my cancer had got worse. On top of that - two other things had joined the fun - pneumonia and an inflammation in the bottom of my lung. So much for their original ideas of either a blood clot or fluid in the lung. (I knew it wasn't fluid in the lung because I felt light-headed - fluid in the lung or chest just makes me feel generally heavy. Including my head.)
So I spent a couple of weeks in a lovely ward in the Osborne Building of Leicester Royal Infirmary. Seriously - the ward really was lovely. It was a six bed bay. The staff were friendly.
Not so lovely was the news that I was going to get chemo (apparently whether I actually wanted it or not. That was the thing which scared me the most. Going from being told by both an Oncologist and a Cardiologist that I didn't have the reserves in my heart for chemo to being told it was now last resort time was not pleasant at all. Especially when the Oncologist refused to consult the Cardiologist before she put me down for it.).
I had my first dose of chemo as an inpatient. It went better than I expected. Well, to be honest, it couldn't have got any worse than I expected - thanks to one Dr helpfully telling me I could die during chemo and, in the next breath, enquiring whether or not I wished to be resuscitated if anything did happen like that.
(One of these days I hope someone somewhere is going to teach Drs that I don't deal well with "it could be this or that" and I certainly don't deal well with being told the worst case scenario if I feel like I have been deprived of a choice first.)
I have now had three sessions of Chemo. I haven't had any major side effects yet. The hair is slowly coming out - and the chemo does tire me out but no sickness yet.
The most annoying thing is - I am now on home oxygen. My sense of humour has really come into play with this subject. As I sit in my chair typing this blog post I am attached to what I call my Snail Trail (a tube that connects me to an oxygenator - or compressor - in my hall) if I am attached to the tube all you have to do is follow it to find out where I am. The other thing I have got is what I call my Walking Tank. This is useful for when I am out and about. It is smaller and lighter than a hospital oxygen cylinder (thank goodness). It is still annoying though. If the chemo does its job I won't be on the oxygen for a very long time. My breathing is slowly getting better but I am taking my time with my recovery.
I will try to blog on here more frequently (as much as I can anyway). It may give me something to do whilst I am waiting for the chemo to percolate through my system for a start.