Tuesday, 28 October 2014

The importance of finding the RIGHT doctor for you

Yesterday I spent seven hours in the car travelling to and from the Royal National Orthopaedic Hospital in Stanmore.  14 months after being referred to see Dr Cohen I finally got the opportunity to meet her, and I'm very glad I did.

I was a little apprehensive, especially considering my last appointment with her colleague, Dr Mittal (see A pointless trip to RNOH Bolsover Street) but this trip was definitely worthwhile!

Dr Cohen was awesome.  She's down to earth, approachable, very experienced in her field and keen to help. I came prepared with six pages of notes and copies of various letters and blood tests that I've had done locally.  She patiently listened to all of my concerns and offered constructive suggestions, helpful advice and a plan of action.

Dr Cohen agreed that an intensive rehab programme is not suitable for me at the moment.  I need to address some more immediate issues such as the pain in my head and neck.  She recommended that I see a community physio at home for an assessment and to learn some exercises that might help me.  She also recommended getting a Theracane, which in her words looks like a martial arts weapon!

We talked about my muscles and she said they are irritable and excitable.  I showed her the myotonia in my hands and she though the neurologist used the term to describe what was happening, rather than to diagnose a myotonic disorder but she agreed that it's worth seeing Prof Hanna's team at the channelopathy clinic just to put a line under it.

She gave me advice on sitting in good posture, it's hurting my sit bones so she suggested using a seat with more padding so I'm thinking about recovering my computer chair and padding it out with a little memory foam.

We discussed all my stomach and bowel problems and she's going to ask my GP to refer me to an EDS savvy gastroenterologist.  She also wants me to be assessed by an OT for compression gloves.  We discussed pain medication and she suggested a few options from low dose pregabalin, low dose pain patches and duloxetine.  It's all about balancing the benefit and the side effects.  I'm not keen on pregabalin and duloxetine as I've read too many horror stories about withdrawal and I've had bad experiences with gabapentin and prozac so I might give those a miss.

We talked about me using elastic ankle supports when I sprain my ankle, getting Dr Marten boots for ankle support when walking (not that I do much of that), finding a relaxation technique that works for me, FODMAP diets and loads of other things.

It was a really positive appointment.  Dr Cohen is going to write everything up in a letter to my GP and she'll send me a copy to as my GP surgery is very good at losing important letters.

I'm very grateful to Dr Sobey at the EDS Service in Sheffield for recommending Dr Cohen.  I only wish I'd seen her first instead of Dr Mittal because I might have avoided the physical and mental stress of pushing myself through rehab.  I was so upset when it didn't work, I blamed myself even though I gave it 100%, and I was  and even more upset when Dr Mittal refused to help me because "the only treatment is rehab".  I'm glad that Dr Cohen gave me other options to consider.

I've seen a lot of doctors in the past 24 years and only now am I learning the importance of finding the right ones.  One good doctor is better than 20 bad ones and even though I am suffering today after the 300 mile round trip to Stanmore it was worth it.

Thank you Dr Cohen!

Saturday, 25 October 2014

Indoor pot holes, mobility scooters and the public perception of disability

I've read a lot about disabled people being dicriminated in the press.  If you use a mobility aid or claim disability benefits then you're obviously a faking scrounger who is too lazy to go to work.  I considered myself lucky, I'd never had any kind of comments like that made about me until I had a minor accident in my local Post Office

On Thursday 24th October I went into Worksop town centre with my personal assistant and two of my children.  I visited the Post Office on Newcastle Avenue.  Even though it's the main post office in Worksop it is actually a sub post office, a privately owned business contracted to do Post Office Ltd. business.

When I entered the shop I was surprised to find it in a state of disrepair.  Several floor tiles were smashed, with fragments of tile on the floor.  It looked dirty and untidy but I didn't expect what happened next.

I drove my three wheel mobility scooter across a rug on the floor when my scooter suddenly lurched forward and jolted to a halt.  I was stuck in a hole in the floor!  I eventually managed to reverse out of the hole and my PA lifted the rug to find a significant hole in the floor.  The tile was completely smashed the concrete underneath was crumbling away and there was gaping hole in the floor!  I was lucky not to be injured.

Thankfully my scooter was not damaged so I queued up at the counter, bought my stamps and asked the clerk if I could make a complaint about the floor.  She didn't seem that concerned and took my name and address to pass on to the owner.

I was concerned that someone might injure themselves falling in the hole, so when I got home I telephoned the Post Office customer services.  They basically told me the Newcastle Avenue branch was a privately own sub post office and not their responsibility.

They didn't seem keen to take any action about the hole so I telephoned the local newspaper, The Worksop Guardian.  I told my story to a reporter and I emailed him the photographs I'd taken on my phone.  Later that day the story was published on the Worksop Guardian website:

Woman on mobility scooter falls down hole in Post Office on Newcastle Avenue

Local newspapers are infamous for getting the facts wrong but I think they did my story justice, and they even spelled my name right.  I was pleased with the final paragraph about how the Post Office was now dealing with the problem.  That was the reason I went to the press, to get some action and to stop anyone else falling in the hole.

I thought I'd done my civic duty.  I thought I'd done the right thing.  I guess I was naive because I didn't expect the all discriminatory posts made by trolls on the Worksop Guardian Facebook page.  Here are a few of the comments:

The story about a hole in the Post Office floor had turned into an attack mobility scooter users and my motives for reporting the hole!

I was offended by the insinuations that I did it for compensation.  The thought never crossed my mind. I was not injured, my scooter was not damaged, I just wanted to warn people about a potentially dangerous hole in the floor that had been hidden under a rug.  Was that wrong?

I was disappointed by the attitude towards mobility scooter users.  When did it become acceptable to publicly question people's disabilities?  I appreciate it can be confusing for people when they see a disabled person walk a short distance and then get on a scooter.  They might jump to the conclusion they are lazy or even faking a disability, but the truth is that you don't have to be paralysed to use a scooter or wheelchair.

There are many conditions that cause significant pain and fatigue to walk more than a few yards, but it is also important to maintain fitness and mobility to stay healthy.  I walk as much as I can.  There are days when I can walk short distances and there are days when I cannot stand at all.  There are days I can get around on my mobility scooter and days when I am so ill I need to be pushed in a manual wheelchair.

I am not faking it.  I am not lazy.  I am struggling with several chronic health problems that make it difficult for me to stand and walk.  I struggle with pain and exhaustion every day and I am very disappointed that the general public see me and my scooter in such a poor light.  I wish I could educate these people on what me and other disabled people go through every day.

I shared my feelings on Facebook.  A good friend of mine reminded me, "Local paper comments are where trainee trolls go before they get a bridge to live under."

Always remember kids, don't feed the troll!