I remember a couple of years ago I was in London, along the South Bank.
It was a place I knew really well from when The Teenager was a baby; I’d walk for miles as he screamed for no reason.
I’d stop at the book stall where he was momentarily distracted by the endless rows of colourful paperbacks, having a coffee at the National Theatre (where he screamed some more), then crossing the bridge and walking past St. Paul’s before making my way home to Shepherd’s Bush.
A couple of years ago, I could barely make it onto the South Bank walkway from the hotel I was staying in. I was stunned and angry.
I had a similar experience yesterday. I’ve taken a taxi to hospital for several years now, despite living very near by. As the driver dropped me off right outside the main entrance, I remembered the days back in 2011/12 when I would park outside the hospital grounds and enjoy the walk.
There is no way I could do that now. When did that happen? Mixed up in having to take a taxi due to parking restrictions, I had lost something.
And it got worse.
From the main entrance to the MS nurse clinic, it was a long, long walk. It took me several stages. What happened? I had my stick, so that helped, as much as I didn’t want it to. There were metal benches dotted along the way and I sank into them and pretended to look at a letter or my phone (no reception).
I was truly stunned. I knew things were bad, just not this bad. My walk has always been wibbly-wobbly since MS. I grab things, hold onto any passer-by (never a single, eligible male, sadly), and bounce off the walls. But this was different.
Despite three courses of Alemtuzumab treatment, there is always that lurking thought that my MS hasn’t quite stabilised (although a lot more than it perhaps should have) but it is definitely getting worse.
Frankly, I’m scared. Is it a slippery slope or will it stabilise? Why does the base-line seem to drop continuously? Am I just getting older? Why does my MS still seem to be rapidly-evolving and highly active?
So many questions. The evenings are getting worse, with the nerve pain ramping up around 3pm. There are many evenings I regret getting rid of the telly in my bedroom.
If I could just sort out the pain in my legs, I’d be happy, but I’m already at the highest limit, 600mg a day of Pregabalin. Arms I can cope with – they simply don’t obey, and I’m used to that.
It’s the legs. My freedom, my everything. I feel like a walking med student map, with all nerve channels coloured brightly and buzzing.
I used to think of MS as a see-saw – treatment, better, more treatment, better – but now it seems like one of those slides kids get stuck on. Good to start with, twig in the way, blip, bit more, then sliding to the bottom …
It will stabilise …. but it’s very scary when it’s happening to you , I get that! The heat is not helpful either . I’m doing things in stages at moment as my energy levels are in my boots ?
Take it easy and rest in between everything! Stay cool ? x
Thank you so much! It’s horrifying 🙁 It was a real shock to be so dependent upon taxis to hospital when I walked before.
Heat doesn’t help, but it’s been a few years now, since that freedom! x
This sounds very very familiar to me.
Watching my husband’s walking distance getting shorter and shorter over the last 14 years has been heartbreaking at times . You just learn to find ways to deal with the problem – i.e electric scooter. One has to remain positive and for every problem there is a solution ! Often it has to be an unconventional and imaginative way!
You’re so right!!
It’s painful. It’s incredibly hard. But it’s more reason to stay put and read 🙂
X
I may have asked you this before but, have you considered HSCT?
It’s working well for a friend who like you had tried everything else. If you’d like me to put you in touch with her, let me know.
xx
Hello
I have heard great things about it but I can’t afford it 🙂
x
I would read up more about results before considering HSC. The failure rates put me off!
It’s a really tricky subject – I’ve met people who swear by it, but others for whom it hasn’t worked at all. I think what would make me hesitate is the recovery time! X
It’s available on the NHS if you meet the right criteria. I have friends in Charing X who’ve been offered it.
I talked about it with my neuro but I don’t meet the criteria as Lemtrada has worked brilliantly for me. I can’t remeber all the health criteria but it done in the London hospitals. Maybe worth investigating some more?
That’s really interesting, thank you!
I’m seeing my neurologist in October so I will bring it up with him 🙂 X
Heat is definitely a big factor. Accept help when its available (hospital porter if you’re really struggling) The hospital is a real measure of how you’re mobility is doing. I remember the days of driving myself and strolling in (well stumbling to use your words). To be honest, i’d rather not have to have had the scooter, now power chair, but they got me out and independent again at least.
So true – I remember at the start of MS, I didn’t even think about parking up and walking for an age to get to the clinic! Now it’s a whole different matter 🙁 Needs must though, you’re right. It’s all about maintaining independence, no matter what 🙂 X
Google Travelscoot. Mine has given me my independence back. Crowd fund it? I’m sure everyone who reads your blog would chip in a couple of quid! I know it’s hard – especially when the heat makes your muscles turn to jelly and it’s bloody terrifying – but keep your chin up ???
Fab idea 🙂 I can move around in short-ish bursts, it’s the longer distances that defeat me!
I used to walk to the shops from my house, not far at all, but totally impossible now 🙁 X
Yeah me too – and now i can do slightly longer distances because of the scooter. It just takes away the stress of “how far will i have to walk? Will there be somewhere to sit?”. Lifts into a taxi, perfect for train journeys (just need to book a ramp and the wheelchair space), folds down if you need to put it in the car boot, really light…
Honest I’m not on commission! Just mine has really vastly improved my life and i want yours to be there too! ?
It does sound really tempting, especially for slightly longer distances, like you say.
Have been googling already! X
On another tack, have you heard to the MS Gym? It is an American Guy called Trevor Wicken. He does a free facebook exercise but if you can afford it (after checking out the free ones first) it works about just over £20 a month. He is the first one who seems to really understand MS. He does different levels to cater from wheelchair bound upwards. The paid for one has a members Only Corner where people can chat and compare notes. I was diagnosed with PMMS 10 years ago, and I can honestly say I feel more positive now than at any time.
That’s brilliant! I’ve never heard of it before, but will definitely look it up. Thank you! x