I’m back home from hospital and reunited with my sofa after my second course of Campath.
Having a combination of steroids and Campath over three days has left me exhausted but with a brain that refuses to sleep, so I’m not only a vampire with the continuing heat we’re having, but a shuffling, glazed-eyed zombie to boot.
What makes it all worth it though is that I have gone from having relapse after relapse to not having had a single one since my first course last summer. I still have the same symptoms, but there has been no progression – a bit like being frozen in time for a while, giving me breathing space to get my life back into some sort of order.
The hospital stay was brilliant, thanks to amazing staff, superb care and friendly fellow-inmates. One brave patient a few beds down from me let me test drive her swish mobility scooter one evening. Making sure I had the dial set to ‘tortoise’ speed rather than ‘hare’, I trundled up the corridor, executed a rather neat three-point-turn and reverse parked the scooter next to her bed again to a modest round of applause. After being hooked up to an infusion for most of the day, the freedom was exhilarating.
The hospital food arrived regular as clockwork and was, well, let’s just say, designed to be eaten by people with only a few, if any, teeth left. If I’d been given a straw rather than a knife and fork, I wouldn’t have been surprised. But steroids had given me a ravenous appetite and I ate it all, then ate all the food my mum brought me in afterwards, then woke up starving in the middle of the night and rummaged around in my bedside drawer for biscuits I had stashed away.
Aside from the actual treatment, probably the best thing about the last three days was being in an environment where MS was normal, and nowhere near the most serious illness being treated. It was a relief to chat openly to other patients with no need to explain anything. I think the steroids must have given me not only an uncontrollable appetite, but a bit of a motormouth too. One patient’s regular visitor quipped, ‘blimey, it’s awfully quiet in here when that Scottish girl reads her book…..’
Good to hear that your stay in hospital wasn’t too bad. I have to admit I was worried about you; hottest day for seven years and NHS hospital is rarely an encouraging combination.
Keep up the great blogs.
Thank you! It was very, very hot and having a plastic wipe-clean mattress made for some interesting sounds when I got out of bed, lol. But all worth it to have the chance of such amazing treatment.
Very happy to be back home though!
So pleased it went well, hope you get plenty of rest and pampering now you’re home. Can’t wait to read about your recuperation.
I’ve had loads of offers of help, which has been lovely. The Teenager’s back from London on Saturday, so am hoping to look a bit more normal by then, although he knows I’ve got to take it a bit easy.
Onwards and upwards!
All sounds very positive and good to read that your hospital stay wasn’t too bad. I hate having to explain everything over and over again. Made me smile to read about your little jaunt up the hospital corridor on a lady’s mobility scooter. After much persuasion I have finally naught a Luggie ( second hand ). It has given me so much more freedom and means I can do so much more with my husband and daughter 🙂
The scooter was brilliant – very neat and nippy. The lady offered to let me take it down to the concourse, but I thought I might have been pushing my luck, negotiating two different lifts! She too said that it had given her an incredible amount of freedom and was able to ‘chase’ after her grandchildren!
I totally agree. I’m only 46 so it was an incredibly hard decision to make, but while I can walk short distances with a stick for anything longer I have had to be pushed in a wheelchair by my teenage daughter and husband which I’ve hated. The Luggie gives me back my independence and means I can do more.
That must have been a hard transition for you to make. It’s heartening though to see more and more scooters around. It helps to normalise it, which can only be a good thing.
When I found I needed to use a stick now and again, I found it incredibly hard to suddenly be ‘visibly’ disabled. Now I kind of take it in my stride, but I’m still not entirely comfortable, but ultimately, if it gets me round the place safer, I’m all for it!
I think in some ways being seen with a stick was harder … using a wheelchair harder still but having done that the transition to a scooter has been easier …. it’s regaining that freedom and independence that makes it so. I wouldn’t say I’m totally comfortable yet … it’s still a new thing …. but people’s responses especially strangers on the street has been very positive so far
Yup, it’s all about freedom and independence! Will have to use my stick tomorrow when I pop out to the shops. Haven’t had to use it in a while, but too tired to worry about right now.
Just enjoying lying around right now, reading and sleeping!
You have to look after yourself right now as you know. I hope you will soon start to feel much better and get some energy back xxx
Am taking it easy. If nothing else, MS trains you well in the art of having to sleep at odd times! Am going to be patient with myself. Mum’s just dropped off my chocolate so all is well in the world, lol.
Lol chocolate solves everything. I’m still learning the art of pacing myself. It’s still very new but I’m sure ill get the hang of it. I am getting better at it but there is a part of me that will always be a rebel :-p A year and a half down the line I feel better then I have done for all of that time. I hope this good run continues for a while longer
Fingers crossed! Just thought I’d close my eyes for 10 minutes and woke up two hours later to the food delivery man banging on my door. Oops. Think I am more tired after this course than last year’s, but maybe that’s just age!
glad things went all right 🙂
if it was me, i would be complaining about the food, or i would have just asked for a straw and watched the nurses look confused :p
Ha! I should have, didn’t think of that! I just feel sorry for the peeps who are in hospital for weeks on end.
If you could please full me in relation to where you are? My daughter has MS which was diagnosed about 6 years ago,so far she has had all the drugs available in south a frica and we also took her up to scotland and had stents put into arteries which she says opened her brain up like a new light bulb.We have been following the Campath development for the last 5 years and we can come back to the UK if the treatment is readily available.Could you please revert to me at your earliest convience Thanks Val
Sorry to hear about your daughter and hoping she is still doing as well as possible.
I’m in the UK but currently Campath is not yet licensed for use with MS, only leukaemia. We’re all hoping it will be passed by NICE (National Institute for Clinical Excellence) and then be priced low enough for hospitals to be able to afford.
My neurologist offered me the treatment as the hospital I am under was part of the Campath trial, and from what I believe, there was some Campath left to be offered to people like me (with rapidly evolving, or highly active MS) on a ‘compassionate’ basis or ‘off-license’ basis.
The MS Society and MS Trust are both following Campath’s progress very closely, so it might be worth keeping an eye on their websites. I’m so sorry I can’t be of any more help.
Unfortunately we are all getting older lol I would say you just needed the rest. Hope it has done you some good or at least given you enough energy to put the food shopping away….. Got to keep a sense of humour x
I put all the food away and fell asleep again, lol. Totally wiped out. Think the steroids are leaving my system, taking every last bit of energy with them! Thank heavens for Charlie Bingham ready meals. And chocolate! x
Welcome back! Am picturing the song “Reunited” play as you and your sofa are, well, reunited.
So glad to hear your stay wasn’t a horrible ordeal. Hoping your recovery goes well and you are able to sleep!!
It was a genuinely moving reunion. Very emotional. We’ve hardly been parted since.
Everything’s been really good. All I need now is to get my old mojo back! Can’t believe how tired and spaced out I am.
Lol thought that might happen. I’m taking 60mg of steroids alternate days at the moment and they finally seem to be doing something.
Bless, hope you’re ok with them? I’m really hoping this will be my last course in a very long while. They do work though. I think you get a course of them alongside the Campath as the Campath can sometimes trigger a relapse. Just wish I could stop eating!!
Fourth time lucky for me I hope but this is the first time I’ve been on such a high dose for so long. Been on them since March. Sleeping is ok now finally but I can eat for England I do get flare ups of spots on my face but nothing too bad. The price you pay I suppose
True. It’s all about weighing it up, isn’t it? I had a relapse just before Christmas a couple of years ago, and much as I was loathe to take steroids, I had to, just to get through Christmas and reduce the relapse effects. Was a very good Christmas!
I’ve not been well since I took ill it the end of May 2012 and was worse after a spell in hospital at the end of August 2012 and have had numerous exacerbation s/ relapses along the way. Finally I feel reasonably well a and enjoying a holiday with my husband and daughter It would be so easy to hide away and not do anything but that’s not going to make anything better is it so like many I get on with it and make the best of it that I can ….. I’ve nicknamed my Luggie ‘Madge’ after the character in Benidorm ….if you can’t laugh at yourself 🙂 x
I absolutely love that name! And you’re right, you really do have to laugh at yourself, otherwise what’s the alternative?
I’m not a huge fan of Jack Osbourne’s saying ‘Adapt and Overcome’ but I do like the sentiment behind it. If you can’t change the world, change yourself.
Well you have to get on in life and we can’t always choose the hand we are dealt
Unfortunately had a slight accident today … Madge came of worse and now needs a repair 🙁 bloomin uneven pavements !
Aw, poor Madge! Bloomin’ pavements indeed.
Can you believe it’s going to cost £118 to replace 2 chassis clips ?
I hope you are starting to feel better and starting to feel some benefit from the Campath. I really do hope that it works for you x
That is absolutely ridiculous!! Scammers.
I’m slowly, slowly getting there. Fingers crossed I’ll be back to normal very soon, as, gulp, my son is back from London today. Eek.
Found an American website that sell the chassis clips far cheaper even with postage added on so have e mailed them.
Great news about your son coming home I hope … Although there’s nothing like avin a son or aughter around to force you back to normality lol. Enjoy having him home but take care 🙂 making me smile as I write … I’m great at givin advice ..I’m not always very good at practicing what I preach :-p x
That’s brilliant! Amazing what you can find on the internet, lol.
Can’t wait to see my son, but dreading it as well. I hate for him to see me ill. But yes, having him come home today has probably speeded up my recover no end!
p.s. I’m great at giving advice too and never ever take my own, meh.
I know what you mean …. My daughter has just turned 15 and I hate her seeing me ill too.
I’m sure he will be a tonic ….once you’ve pillowed through his dirty washing … If he brings any home lol Enjoy and continue to get better 🙂 x
Ha! Very true. He’ll have a whole load for me. And the house will suddenly become very noisy once more. Oh, and the loo roll will go down at an alarming rate, lol.
Lol and the loo roll will never be replaced when its gone…… Just an empty one waiting for the next person lol
And that next person is always me! x
Of course ….. Enjoy the time it will go quickly x
Yup, be back in work before I know it, meh.
Great news the Campath is working for you. I had steroids afew months back for a relapse and the fog hung around for 4-5 days. Such a relief when it goes. Just arrived in far north of Scotland to visit family. Was lovely up until Inverness then the fog and rain arrived.. Apparently I missed the Scottish heat wave by a day. Maybe I’ll crack open he vitamin D earlier than planned 🙂 hope your recovery goes well
Have a fabulous time in Scotland! And watch out for the midges, lol.
Steroids still waking me up in the middle of the night, but hopefully they’ll be out my system soon. That might help with my chocolate consumption too. Fingers crossed!
Totally realize that I am a tad tardy on this as MANY have already expressed it but NOT going to miss the chance to say….WELCOME HOME!
Thanks Meg! Can’t tell you how good it is to be away from that NHS hospital bed, lol. Saying that, the cat has just brought me a beheaded bird and dropped it at my feet, meh.
Well positive news re my Luggie. The company is sending me two chassis clips free of charge.
Good news. Luggie Freerider are sending me two chassis clips for Madge foc :))
Even better! Pays to speak up. Still smile whenever I see the name Madge.
Madge Madge Madge … Keep smiling lol has been a Godsend and will be right as rain again with her new clips x
I’m so chuffed! You need to get a personalised number plate, lol. MADGE1
Hey that’s not a bad idea lol Quite like that xx
Yay! We need to see pics if you get one!
Lol ill be sure to share pics if I do x
It sucks to have MS! I cry everytime I relapse, it kills me to have pitty looks. I feel like I’m going to relapse again. My eyes usually hurt before they get blurry. I keep relapsing almost every 5 months.
I just stumbled upon your blog and your strength encourages me to be stronger, thank you!
So sorry to hear you’re having such a hard time of it. Thank you for your lovely comment!