Hello everyone

Achy_g
Achy_g Member Posts: 6

I have spondylosis, affecting most of my neck, and associated nerve problems in my arms. Yesterday, for the first time, I rang the helpline, as I find October and November very difficult months. I don't really know what I wanted from that call - maybe just for someone to listen to me, who might understand what I'm going through. And that's why I'm here. 

I've been living with arthritis for the last 5 years, beginning with a spinal fusion to save my right arm from a severed nerve, and physically going downhill from there, really. My latest MRI in the summer had both my GP and then the orthopaedic surgeon saying there's nothing more they can do to help me, as too many joints are affected. I'm waiting to see the neurosurgeons again, but not feeling very hopeful that they will have anything more to offer either. 

I'm very active, have a big dog and walk 5-10 miles a day. I eat a healthy, wholefood, mostly vegan diet, and live off-grid, on the road, in a lorry I converted myself (although I did have help with some of the heavy stuff). I've driven all the way to Africa in it, in slow bursts, like a snail! This was my response to to my physical problems, and a creative way of keeping my mobility, which is the sort of attitude I take with everything. I'm stupidly independent, wildly creative with solutions, but I still can't find a way to sleep through the night because of the pain in my arms. I find it really debilitating at this time of year, when I need to be more resilient, not less, to cope with the extra challenges (gathering and chopping wood, for example) that are part of my outdoors life in winter. 

I'm really tough, but maybe even I could do with access to a support network every now and again. Who knows, I might even have useful ideas to share as well.  

Comments

  • Lilymary
    Lilymary Member Posts: 1,616

    Hi achy_g, nice to meet you. I’m sorry to hear your body is giving you so much grief, but I have to admire you for living your best life. Wow! I guess we all get to a stage eventually when we realise what’s limiting us is not funds, time or imagination, but our bodies, and that can be a bitter pill to swallow.

    It sounds like the onset of winter means some major adjustments given your lifestyle, but I winder whether seasonally affective disorder (SAD) isn’t also part of the problem. Some find using light boxes helpful, and taking Vitamin D. I’m not one for taking vitamin or mineral supplements as a rule, I tend to think a good balanced diet should do the job for most people, but after a long bout of chronic fatigue, my consultant suggested my Vit D levels were low so I have been taking these, and for once I do feel they’ve helped.

    it’s good that you’ve found this forum, it’s a friendly place to come for a chat, a moan when it gets too much, to pick up some tips, and to learn more about The Big A. Have a trial around the site, it’s full of nuggets of great info.

  • frogmorton
    frogmorton Member Posts: 28,050

    Wow! @Achy_g

    Go you!!!! Imagine living so off grid!! I love it and i though we were being adventurous buying a motorhome for COVID-safe holidays!!! I envy your travels and freedom.

    I have cervical spond too and had back surgery many years ago then developed inflammatory arthritis too so you have my sympathy. I am vegan too, but take a vegan multivitamin every day it contains vit D which isn't always vegan. Health has to come first though in this case I am with Lilymary. We just don't get enough daylight in the UK

    Do join in and do hang around sounds like you have a good attitude and might be what we all need at times 🙂

  • Brynmor
    Brynmor Member Posts: 1,795

    Hi @Achy_g and welcome to the Online Community.

    That is a really impressive and independent life-style whilst living with spondylosis - tough mentally as well as physically! Knowing the problems you have come winter when you need to be more resilient, are there preparations you can make to help in support: eg. finding someone who will store some firewood for you earlier in the year in readiness so you don't have to cut so much in winter?

    The section on the website concerning common aches and pains may also have one or two useful entries for you: splints at night for the forearm/elbow or the use of heat/ice packs in the relevant area:

    Do tell us how you get on and also what the neurosurgeons have to say. And do share some of those wildly creative ideas you have with the forum members 😃

    All best wishes

    Brynmor

  • Achy_g
    Achy_g Member Posts: 6

    Thanks for the welcome and positive responses. I'm outside most of the day, so I do get all the light there is! I already take vit d and calcium all year round, since I'm menopausal and not allowed HRT. In winter I always supplement the other vitamins and minerals too. Having watched this pattern repeat over several years, it is just an October/November thing - I cope better once it's colder and drier, which usually happens in December. Still, it might help me to have access to people who understand in these difficult months! 😀

  • frogmorton
    frogmorton Member Posts: 28,050

    @Achy_g

    I have to agree it's much nice when it gets proper cold because it gets 🔆 brighter! That cheers me up no end. My sister has one of those light boxes and always plummets this time of year. I do a bit too, but some struggle far more.

    Well done taking your supplements and being outside as much as you can. Do you have a telly in your cab?

    I know all about not being allowed HRT (sensible anyway 😕) we will survive! One day I'll be 'normal' again...maybe😁

    Do hang around I think this community is a good one and can definitely support you and vice versa.

  • Achy_g
    Achy_g Member Posts: 6

    I'm going to respond to the last question here because I'd like to know if anyone else has reached the same conclusion. After my surgery, I asked the consultant for advice about how to cope, as I was forced to retire on ill health, so had the opportunity to redesign my life. He told me to move all the time, except when I was resting, and never sit down for anything. So I did exactly that and as a result, don't watch TV. I have discovered, through trial and error, that the best pain distractions for me are active, not passive ones. I need to be fully engaged, and TV just doesn't do that. Now, l rarely find anyone else who doesn't watch it, so are there any others here? 😆

  • Lilymary
    Lilymary Member Posts: 1,616

    I went without tv for years and didn’t miss it after a while. But I’m afraid my condition means being active just means pain, and it’s a bit of a sanity-saver right now.

Who's Online

15
frogmorton
frogmorton
HelenS
HelenS
Janellen
Janellen
kaza68
kaza68
PeterJ
PeterJ
+10 Guests