Keep Taking the Steroids!

Keep Taking the Steroids!

john connor
Six months ago, I was a reasonably svelte 14 and a half stone.

I’m not sure how I managed it, but it was certainly before pitting edema wrapped itself around my shins and calves like bulbous sacks of wineskins. I managed to get on the scales a while back, and I was shocked to be pushing 17 stone. Sure, I could do next to no exercise by this time, but I think my legs are now creating their own gravity wells.

This became an issue last week when a relapse meant I could no longer move. Doctors offered me steroids, but I was trapped at home in my first-floor bedroom.

The National Health Service (NHS) came to my rescue. I was lifted down to an ambulance and taken to my two infusions. This service had been privatized and farmed out to the delivery company DHL. They hit the headlines in the United Kingdom in the last few weeks when they took over Kentucky Fried Chicken’s supply and failed spectacularly. At one point, things got so bad that the police tweeted that this wasn’t something to phone the emergency services about. One customer ranted her shock to the media: “I’ve had to go to Burger King!”

Getting me out wasn’t so bad: A carry chair and gravity seemed to do the trick. If they’d covered my mouth with a bite mask, I’d have looked like Hannibal Lecter.

Getting me back was another matter. They were always different crews and none were ever issued instructions. Les, who was an assessor for the NHS, had been ’round and given the all-clear. They had a nifty stair walking device … that didn’t like corners. The first team struggled mightily. The second — as if to show they knew what they were doing — sailed up. Which was fitting, as they were both from Somalia. Lots of, “I am the captain now.”

Though in extremis, if you can have a laugh, things go better.

At the hospital, severe funding cuts led to most lifts not working, which is a problem for a hospital built ’round a high rise block. Still, unlike public housing, no one was peeing in the few that worked. Have no idea if this happens elsewhere in the world, but it most definitely is a British trait.

On my final day, the hospital transport system was falling apart. No one knew anything, though people working there did their best.

Now, two days of steroids had not yet made me fighting fit. But they had most definitely made me up for a fight! A fellow patient was plopped down next to me and proceeded to be obnoxious to the staff. I told her the present problems were a direct result of government cuts and proceeded to be really obnoxious to her. Surprisingly, she eventually became reasonable, and staff got her a ride!

Years ago in a psychiatric hospital dispensary, as an outpatient, a fellow patient attacked me with his umbrella. Luckily, I was also carrying one — he was mortified when I took up a flamboyant Errol Flynn stance and parried back. He may have seen “One Flew Over the Cuckoo’s Nest,” but I was also armed, having read Ken Kesey’s original novel. I went into full McMurphy-Nicholson mode.

He fled.

Being a patient, compared to a volunteer or NHS worker (I was both for a bit), is liberating.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

John Connor BNS Writer
‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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John Connor BNS Writer
‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.

6 comments

    • Kimberly Williams says:

      This is why I choose not to have steroids when I have an attack (relapse), unless it is more than I can handle! I have not come across one yet!
      Hang in there!

  1. Teresa Anger says:

    Love these articles! It seems like all we hear from our health care providers is depressing! At least these humor some of us!! Now, I wish every state had workers to help us with household stuff! I can’t carry my laundry, clean, stand long enough to cook or do dishes, can’t sweep or vacuum….. and definitely can’t walk through stores like Wal-Mart with the things you need strewn across a store the size of a city block!!!pretty much housebound now! All in a few short months! I was A firefighter one week & couldn’t walk the next! Depressing!and as soon as you tell the drs that you have ms – they just give up on you!

  2. Polly Sears says:

    Well, it sure doesn’t seem like much has changed from 1982, when I was put on an Orthopedic Ward due to a broken ankle! Yes, I am an American, which was a good and bad thing ! The Ward -made up of about 60 women-most in their 70’s who had had hip or knee surgery, were in agony, and, crying out for nurse to bring their medicines and change soiled beds. I was told the nurses rarely showed up–SO-being a typical “Yankee”-I started a chorus of chants-everyone joined in–demanding meds and clean sheets. I was chastised by the head nurse , and, had a mentally ill teen who had tried to commit suicide put in the bed next to me. Having a degree in Child Psychology helped me speak to her about what led to her making such a drastic decision. She had been being abused by an Uncle, and, no one had believed her. Anyway, about a year later I was back in the States and diagnosed with MS.Well, I have done very well up until about 2 years ago, when my MS started acting up–Never a DMT until Oct, when I tried Ocrevus–can’t say it made much of a difference-but, time will tell. Good Luck and Well Wishes from Massachusetts !

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