My Solution to the Blue Badge Debate

I’ve not blogged in a while. There are mixed reasons for that but it mainly comes down to the fact that for ten years or more I have been on stonking doses of morphine and other meds and having changed GP surgery recently, my GP advised that the dosage I was on was potentially lethal, informed by new medical studies about the use of morphine at that level. I had no choice but to accept that my meds needed to change but it brought out a lot of anxiety for me. Anxiety that I would be in pain; that my life would be impacted – my work, my ability to parent, hell, my ability to just be me, wash my own hair and get on with my every day life. The reduction in the meds has been gradual to stop any withdrawal symptoms and I have got it down to a reasonable dosage although the GP wants to drive it down even further. However, there is no doubt that the pain is now not managed. It is taking its toll on me both physically and emotionally.

So, when the Disabled Blue Badge scheme hit the headlines recently, it prompted me to return to my blog to share my opinion on that matter because it is close to home, particularly at the moment.

I have had a blue badge for a number of years. I suffer from two chronic conditions: an inflammatory arthritis and Ankylosing Spondylitis, both of which give me chronic pain in my spine and in my joints. I was diagnosed around 14 years ago and have been battling with pain and reduced mobility ever since. The thing about my conditions are that they are incredibly variable. One day I can manage certain tasks, like walking from the car to the shop, lifting my baby girl, putting the washing in to the washing machine and so on and on other days I am bed bound or physically can’t walk or move. It is so difficult living with this uncertainty. It is hard to plan things and for years I felt like all I did was let people down. Texts saying ‘I’m so sorry. I’m having a flare up and I won’t be able to make it today’ were a regular occurance. I let friends down not just once, but repeatedly. I would feel fine one day and arrange something and the next I would be floored. These days I am wary to arrange anything at all as I can’t stand the feeling of letting people down at the last minute. It makes me feel like a crappy friend/ daughter / mother and believe me I already beat myself black and blue with mum guilt, I don’t need any further guilt on my plate. I’ve lost friends a long the way and I certainly don’t get invited to the nights out and the parties that I used to, but theres no point crying over an invitation that I probably wouldn’t be able to attend anyway.

On a ‘good day’ I still battle with chronic pain. I may be a little more mobile but I am still, constantly, in pain. I depend on my car and the blue badge even on those good days as without that I would be pretty lost. Every day trips to places like the supermarket, the bank, the doctors, would be nye on impossible if I wasn’t able to park close by in a disabled parking bay. I start the day with a certain capacity and energy and if I use up that capacity having to walk from a parking bay further away then I am going to be pretty snookered for the rest of the day. On certain occasions, I push through the pain and I end up using a week’s worth of capacity in one day and then I’m out of action for a week after, bed ridden or unable to move. Some days I knowingly make that decision because I want to live my life. On those days I rebel. I want a piece of my old life, even if for just a day and even if it comes at a cost.

Sometimes I have to use a wheelchair, sometimes I have to walk with a stick and sometimes I walk independently; it totally depends on how I am doing and how active the diseases are. Over the last few years as a blue badge holder, I have had my fair share of run ins with people who have seen me use a disabled bay. I regularly have people inspecting my badge, quite obviously, through the windscreen, after they have seen me. I personally think that people see me pull in to a disabled parking bay and on the surface I look (ahem) (relatively) young and, possibly on the surface, healthy. I’m judged before I’ve even got out the car sometimes. People shake their head at me like I’m not supposed to be there; like I don’t have the right to be there. The irony of the whole thing is that I would so love NOT to be there. I would give anything to be able to park at the furthest point in the supermarket car park and cart wheel in to the shop if I could. God, given the chance I’d hop around the perimeter of the car park on one foot, naked.  Sometimes I get the feeling that people view a blue badge as a privilege. That idea knocks me sick to the stomach. Nothing about needing a blue badge is a privilege. I’d give anything not to have that so-called-privilege.

Then there’s all the times where I have come face to face with people who have judged me as not needing that ‘privilege’. Maybe I was having a good day and on the surface it didn’t look like I needed it. Usually I’ve only just got out the car so they are yet to see me even walk. I’ve had vile comments said to me. I’ve stolen the badge. I’m lazy and just want to park close to the shop. I’m exploiting a disabled relative’s badge. I’ve heard it all. Fortunately for me, most of the time my husband has been there with me. My husband is an incredible man. He has stood by me and supported me in every which way you can think of. He has to do so much because I am unable to and I am so grateful for that. He is protective of me. Fiercely protective of me. He isn’t able to stand by when people make these comments and on more than one occasion my husband has challenged these people, shouting at them the reality of my situation. Their response? I’ve never had an apology once. They shake their head at us. Or, at best, they bow their head and scurry on.

My personal experience has found that the most judgemental people are Blue Badge users themselves. I’m not one for making mass judgements but based on my very real and personal experience, it has been blue badge users of the older generation that have made those judgements about me. Whether it’s a generational thing or not, I don’t know but I think it’s really sad that those who share similar limitations in their lives (thus requiring a badge in the first place) would be so quick to judge others on whether they are worthy or not of the same badge.

The fact that the government are now considering allocating those with ‘hidden disabilities’ and non-physical disabilities blue badges sits very comfortably with me. On some occasions I am sure my disability is hidden. I still get up on a morning and try and put my face on. I still try to (badly) do my hair. Maybe that’s the reason, maybe I don’t look poorly or disabled enough, I don’t know. I know I have had similar judgements made when I have used a disabled toilet. On the surface I possibly look absolutely fine. But look closer. Follow me for an hour or two and you’ll see my struggles. Even on a good day.

The opposing view is that those with non-physical disabilities don’t require a parking bay as much as those of us with physical limitations. I don’t buy that. There will be people out there with Autism or Dementia who need support to access places we use in our every day life. Who is to say they need that parking bay less than me or someone else with physical limitations? Who made anyone judge and jury? I totally understand that there are limited numbers of disabled parking bays and, perhaps, that is the only point I would agree with. If more disabled badges are being allocated then maybe more spaces need to be added. But that is the only point made by those opposing the suggestion that I agree with.

I think the solution to the whole debate is kindness. If we were all just a little more kind, a little more empathetic, a little more sensitive, then society would be so much better at supporting those who require a little extra help to access places. Every one who is given a blue badge is given one for a reason. It’s because they have it tougher than someone who is emotionally, mentally and physically healthy. It’s because their life has challenges.  It doesn’t matter whether their challenges are greater or lesser than mine. It doesn’t matter whether they look well on the outside. It doesn’t matter if they got the last disabled parking bay in the whole of the town. Give them a fucking break. They have that badge for a reason. Nobody has any business judging, commenting or head shaking.

The government should allocate blue badges to whoever they believe requires one. If a doctor has assessed a person as needing one, then that should be enough for everybody else. It doesn’t matter whether their disability is visible or not; a doctor has said they need that badge, that should be the end of the discussion.

I’ve been reduced to tears by someone who judged me as not being ‘disabled enough’ to warrant a blue badge before. I was having a really bad day and it had taken me every ounce of strength to get dressed and get in the car to nip to the shops for a couple of essentials. My capacity for the day was done with just getting out of bed. Constant pain wears you down on an emotional level and I was already at that point of only just being able to hold it together. I just wanted to get to the shops and get back home without seeing anyone I knew, without being asked if I was ok, without even making eye contact with anyone. I looked terrible. I felt terrible. I was conscious of the way I was walking and I felt fragile. A couple of vile comments from a complete stranger completely broke me that day. It had an impact. It only further compounded the shitty-ness of my day. Nobody needs that, especially those who live with health challenges every single day.

The solution to the debate? Be compassionate. Be kind. Be sensitive to the needs of others. If you’re a fellow blue badge holder, don’t compare your needs to that of someone else – you can’t possibly tell by looking at someone whether they deserve to be parked in a disabled parking bay.

Kindness is the answer. Topped with a sprinkling of sensitivity and a drizzle of compassion.

I took Class A drugs During my Pregnancy.

It sounds awful, doesn’t it? ‘I took class A drugs during my pregnancy’. I bet you are picturing the worst mother in the world. I bet, as I speak, an image of a toothless Jeremy Kyle-esque character is unfolding in your mind.

I’ve got friends who abstained from drinking coffee for the full nine months incase it had any ill effects on their developing baby. I’ve got friends who quibbled over taking half a paracetamol when they were hit with a migraine. Me? I took morphine every single day. Twice a day. Sometimes more.

 

Am I a bad mum? I certainly felt like it. Every single time I swallowed one of those pills, I felt a punch in the gut of my stomach. Guilt. I thought about my poor, defenseless, innocent, developing baby and the damage that was potentially being caused by, what felt like, the most toxic poison I could have been feeding her.

 

The reality was though, I either took that morphine, or I didn’t continue with the pregnancy. I’ve been on a stonking dosage of morphine for seven or eight years now. With a chronic pain condition, other medications just don’t cut it. It’s not the type of thing you can suddenly stop and without it, I wouldn’t be able to get out of bed on a morning – physically and mentally. I’ve been consumed by pain before and it is hell on earth; life without pain management would be no life at all. Going medication free wasn’t an option and after ten years of trying to conceive a second child and eight years on and off fertility treatments, not continuing with the pregnancy was not an option either.

 

However, I would be lying if I said that in my darkest moments I didn’t have doubts. I contemplated, very deeply, what I was doing to our baby and whether or not it was fair to continue. I googled way too much. I googled every possible bad outcome I could think of. I felt guilt as the Doctors explained to me that my baby would be born dependent on morphine and that they would have to go through the withdrawal process, being given smaller doses of the drug to help their body copy with the withdrawal. I wondered if it was moral, if it was ethical, to put a baby in that position through no fault of their own.

 

When I think now about those dark moments, it makes me feel sick to my stomach. Sick to my stomach that I, even if for just thirty seconds, contemplated life without her because I was so terrified of making her poorly.

 

It wasn’t easy. Nine months of swallowing down a medication that you know is going to directly impact on your baby has its own side effects (pardon the (very poor) pun.) Namely, guilt. It didn’t matter how many Midwives, Obstetricians or Doctors reassured me that taking the morphine was necessary and that the situation was more than manageable with the right plans in place, I still felt guilt.

The sort of guilt that makes your heart pound so hard you can hear it in your ears whilst lying perfectly still in bed during the dead of night.

 

She was born perfect. A little earlier than expected, but she was born perfect. It was incredibly difficult to watch her go through withdraw in special care and I was utterly guilt ridden throughout it all but that light at the end of the tunnel came three months following her birth when we administered her very last dose of morphine. I will return to this at a later date and I’ll write about our experiences during her withdrawal in the hope that it helps someone else facing the same situation. I found medical journals and articles all over the internet but they definitely weren’t written in a lingo that I understood very well. I searched, hoping to find a parent’s personal experience of it all to no success so I will definitely dedicate a future blog post to our experience of it all in the hope that it helps someone somewhere in the future.

 

Coincidentally, my hubby and I were looking at photographs of her today, and the difference in how she looks in those early weeks to four to five months later in mind blowing. She looked very poorly. It breaks my heart to see those photographs, even eight months later. She is unrecognisable from the big, wide eyed smiler that she is today. It was a difficult journey but we made it. Do I still feel guilt? Every single day. I feel guilty that she had a traumatic start to life and still feel extremely responsible for that. I know technically speaking I didn’t have a choice, but it doesn’t feel like that to me. I still feel very personally responsible for taking that medication. But the idea that, in those darkest moments, I contemplated not putting her through it, makes my heart plummet to the bottom of my stomach. Because the world would have truly missed out on a beautiful soul who has already, in her short life to date, brought an immense joy that is simply indescribable.