My wonderful friend Caroline took me and Phyllis the Hernia to hospital today.
Long story short, we’ll part ways very soon (Phyllis, not Caroline).
Anyway, before the appointment and after the obligatory trip to ‘Tiger’ in the hospital concourse, we sat with our coffees amongst the benches and abandoned sandwich wrappers and it hit me, full-on.
I’d been thinking about it for a while, but here it was highlighted: I never (very rarely) go out alone.
Caroline has been with me to so many MS appointments, MRI scans, endocrinology appointments, overnight stays with Alemtuzumab. She takes me to cafes, charity shops (I love a good rummage), exhibitions. You name it, she takes me.
And my long-suffering Boss/Friend – he picks me up for work, drops me off, takes me on long car trips, to Austria and Switzerland, where all I have to do is learn a few more foreign phrases and watch out for lane switches.
I can’t remember the last time I went to town on my own, despite a bus-stop being right outside my house.
Me and Caroline talked about it – I mentioned fatigue, foot-drop, balance. I might not hold on to her arm, but having her at my side means I have support and more importantly, an ally if something stupid happens (whoops, there I go again).
When did this happen?
I’d average that I spend around 75% of my time, at home, alone. Home is familiar, I know every ‘grab post’, every swerve, corner and dodgy step. I can pinball quite happily on my own. Perhaps a bit too happily.
In short, I just don’t go out alone, and how awful is that? Why didn’t I see this coming? I used to stride confidently, everywhere. Now I’m hesitant and I look down, not up, missing out on so many things.
Ever resourceful, Caroline has challenged me to get the bus and meet her in town. It’s a first step?
Inside, I am panicking, planning, worrying. I’m too happy at home and too comfortable with my two closest friends.
Perhaps it’s about time I took a (foot-drop) into the unknown?
I’ve just been for a little walk – alone. It was only along our little lane – probably less than 50 yards, with two walking poles but I did it, alone, and I helped myself to some blackberries on the way!
The OT called yesterday and I said I was looking forward to having a ramp installed from the front door so I could go out alone on my scooter. She asked when I last went out alone and I couldn’t remember. I’ve just checked and I went to the hairdresser’s on 8th July – nearly 2 months ago! I don’t pop over to my mother in law’s house any more, I don’t go to post a letter, I don’t even go out to put clothes on the line any more. I don’t go out at all unless my husband’s around. But I’ve been for a tiny little walk and it was great!
The ironic thing is that I spent three days alone in Cardiff over the Eisteddfod – but I had my scooter for company there.
Get on that bus!
You’re an absolute sweetheart, thank you!
I’m just shocked how little I’m on my own, outside. And it worries me. Surely this isn’t right??
XX
It’s sometimes difficult to know the difference between a healthy challenge and being downright foolhardy!
A very good point :-). My friend reminded me that I don’t even venture out for the weekend newspapers any more – I time my shopping delivery so they come with it 🙁 X
We’re hiring a static caravan which works quite well for us namely:-
Affordable, with some financial help (my wife getting some respite),
Accessible,
As we’re hiring it….no maintenance…piped gas heating and oven,
The region is very familiar to us and my wife still has contact with a friend who has a static there.
I now have a seated rollator, which means I can go for a walk …..short distances on my own. Alternatively, I can drive to a nice viewpoint and listen to my favourite shows,
I do like rubbing shoulders with the others I meet along the way,
Get out and get at it!
Jonny B Good
That sounds like a lovely idea! I used to love taking the Teenager to a caravan back in the day, before MS. Would probably be quite a nice thing to do now (outside of school hours!). You’ve got me thinking … X
So pleased you are finally going to have Phyllis removed it seems a long time now. I have to go out alone but had a very rough 8 months not going very far Jeep going lovely ?
Me too!! Not looking forward to the recovery, but she is becoming impossible to live with, lol. Hope you’re well 🙂 X
It must be around 2010 that I went out on my own! The only time I go out at all now is with my husband to do the supermarket shopping once a week any doctor/dentist/optician/hospital appointments which are few, or if we visit our daughter who lives a half-an-hour car journey away and as she works full-time and is busy at weekends, that isn’t often
I didn’t used to be like this as I had a part-time job and for a lot of our married life my husband worked away from home and worked abroad for months on end and also went on a lot of courses for his work. I was independant and had to keep everything ticking over at home, looking after our daughter and taking our pet dog (sometimes two dogs) out for walks, gardening, shopping etc.
It has been very hard for me to come to terms with MS at an older age, but at least I had my earlier years MS free, so I should be grateful for that I suppose. Being housebound has also been very hard to accept, but I’m becoming conditioned to it, unfortunately. I used to love going out, but it’s sometimes difficult in a wheelchair.
I’m so sorry to hear this Joan. I wonder if it was the same for you as for me – it kind of crept up on me without realising it? Not only that, as I love my house and feel safe here, it seemed easier and easier just to pootle around at home and not deal with the stress of going out. And the fatigue doesn’t help too much either!
I think that’s why blogging and social media are so important to me, right from the beginning as it helps me stay connected 🙂 X
Yes, Barbara it did creep up on me. When we moved to Wales in 2007 I was walking unaided, then a stick was required and I was going to a couple of local shops and attending appointments at the surgery, dentist and hairdresser on my own. A bit later I needed an arm as well as my stick, then a portable wheelchair so that I could go on longer ‘walks’ whilst on holiday to Cornwall. For a few years now I’ve had a proper wheelchair with big wheels so that I can wheel myself, but it’s very tiring on my arms so it only gets used around the supermarket having a look around while my husband does the actual shopping.
I’ve always been a homebody relishing my time at home away from work, but that wasn’t forced upon me as it is now.
MS came at a bad time for me (is it ever a good time?) as the symptoms were coming out just as we moved to Wales. Consequently I didn’t know anyone or the area and wasn’t confident in exploring on my own. My husband was working long hours so I had roughly twelve hours a day on my own to fill. Not ideal, so it’s no wonder I became ‘stir crazy’ wanting to get out with a change of scenery, but at that time it wasn’t possible. That’s all in the past.
Blogging is also important to me and I visit quite a few daily and consider them friends as I have lost touch with all but two old friends. I also get satisfaction in my poetry and doing some craft work. I can’t hope for any more than this. Also, for two days a week we, or should I say my husband, (he’s retired now) look after our youngest grand-daughter, which is tiring for both of us as she’s only 15 months old, but enjoyable never the less.
Enough of the self-pity, it is what it is and can’t be changed.
My online community is really, really important to me – they’ve always been there for me through thick and thin! I too lost a lot of friends when MS started. I was in a bad place and I also couldn’t meet up and go out that often so friends just drifted away, but the very best ones stayed 🙂
I like crafting too and tried mini-weaving a couple of months back. It didn’t go very well, but it was fun trying it! I pick up random things in my work, as it always involves a lot of clearance and skips. One of my best was an abandoned pot of earth which I took home and put out in the garden. It has now sprouted into a little oak tree. I like making things out of bits of wood I find too 🙂 X
Sorry, I didn’t explain that right, I didn’t lose friends from MS, I lost them when we moved to Wales from Devon. I was corresponding by letter with a few, but they soon petered out although we still send cards at Christmas. The one who I’m still in touch with I speak every couple of months on the telephone and the other friend is my closest who I’ve known for 40 years, unfortunately she lives in Ireland so haven’t seen her for a long time, but we’re like sisters.
Ah, I see! It’s not quite the same, but I lost friends moving to Wales from Scotland as a teenager, and it’s so difficult to make friends if you enter a school at 14 🙁
Since then, I’ve felt pretty rootless, but I’m trying to ground myself and be thankful, as you are, for my good friends 🙂 X
Hi, as an infrequent bus traveller here are a couple of tips: ask the driver to wait until you have sat down before they move off and make sure you don’t try to get off the bus until it stops. It is such a weird feeling travelling by bus when your legs don’t work properly.
This morning with just my crutch for company I had the pleasure of having a hair do and the going to my local supermarket to have a good nosey round. I haven’t done it on my own for ages. I felt so free wandering the aisles with my new do. But then the body froze and the legs went and I managed to make it to the checkout and called my husband to pick me up. Normal service resumed and back home to sleep for 4 hours after my bid for freedom. But just for a while…
Take care and try and enjoy it. x
Hi Sarah,
Thank you for the tips! Bus drivers are my biggest worry, as I fear falling over. Even if I have my walking stick, I’m sure some people think it’s just a fashion statement, lol.
I just worry about being out alone ‘far’ from home, even if it’s just down at the shops, literally less than half a mile from my house. But I am going to pull myself up by my bootstraps and give it a go again before that window of opportunity closes even more. Feel the fear and do it anyway!! X
So glad Phyllis is checking out v soon. You’ll feel so much better ?
Just love reading your blog and your little chats back and forth with us lot ?
Aw, thank you! It’s really lovely to have you guys behind me, it means such a lot to me 🙂
Fingers crossed the operation goes well and I’ll be back on my feet in no time! x