Considering Mobility After A Difficult Diagnosis

Last Friday I had a consultation with a pain specialist at my local hospital.

I haven’t spoken to anyone about it as, well to be honest, it didn’t exactly go that well. I have been meaning to write this article for a little while, so now might be a good time…

Don’t get me wrong, my hospital consultation was lovely. The doctor was young, helpful and very understanding. She had a lovely way of putting things, whilst still ‘telling it like it is’, which is something I admire and really appreciate. But the bottom line for me was, in terms of my back condition, there really is nothing else that can be done. Surgery is not an option due to my cardiac problems, and I’ve exhausted all of the other pain interventions which might have worked (but didn’t). My doctor was very sympathetic, in a ‘nobody wants to hear this’ kind of way.

In truth, I felt a little sad, as I am an eternal optimist where my health is concerned, but I wasn’t entirely devastated. It’s not a terminal diagnosis or anything, and my lifestyle is restricted by my heart problems anyway, so it’s not like I was going to be an Olympic athlete any time soon (unless sleeping becomes an Olympic sport!).

I don't think my back pain means I'm missing out on a career in any of these Olympic sports...!

In reality though, when someone (like this doctor) asks how much I can do, or what I actually do on a daily basis, the answer is “very little”. I struggle to stand or walk for more than 5-10 minutes without pain. If you think about how many things you do on a daily or weekly basis which involved being on your feet for more than 5 or 10 minutes, you start to realise how restrictive this can be. (Think shopping, cooking, cleaning, school run, going for a drink, meeting a friend for coffee, going to the park, watching the kids play football, walking the dog…)

Add in the fact that I have two very active children, and you start to realise how much I need to modify my lifestyle. Everything has to be thought out very carefully in terms of where can we park, is there somewhere to sit, will there be much walking, etc.

I explained to my doctor last week that, although no-one actually wants to be in a wheelchair, sometimes it really helps.

Strange though it sounds, it can be quite liberating!

Last year we won tickets to the National Pet Show, and the boys were so excited, but the only way I managed to get around was in a wheelchair. Sadly, the mobility scooters were all booked out, so I couldn’t be completely independent and had to rely on my family pushing me around. This was quite precarious when the kids had a go!! I had to decline a similar day out to the Knitting and Stitching show in Harrogate with a friend because of lack of availability of mobility scooters. It’s a shame, it would have been a great event.

Whilst it is hard to sometimes ‘admit defeat’ and take to a mobility aid, it can mean the difference between being present at an event with your family and friends, or being left behind. We went on holiday to America earlier this year, and if it wasn’t for being given help with a wheelchair, I quite simply would not have been able to go. No way could I have managed to stand in the long queues or walk the distances involved in travel via large airports.

Airports can be huge, and there's no way I could make it through and go on holiday with my family, without some help with mobility from a wheelchair or scooter

Hugo wants to go to Edinburgh Zoo for his birthday. There’s another challenge! We’d love to go to Alnwick Castle at the weekend. Parking there is often tricky if you want to get close by. Often my husband drops me off near the door of wherever we’re going, then goes off to find a parking space! If he’s not around, I don’t want to have to constantly say “no” to my kids when they want to go somewhere.

Now that I have been given the information that there is no further help for my back condition, I have no doubt that I will need to consider my mobility issues more and more. In the past, I have been ‘sitting back’ and missing out on things as I’ve been waiting for some kind of cure. Now I know that there isn’t one, I’m determined not to miss out on things anymore. As my heart condition worsens, this will be another reason to consider help with my mobility. I have therefore been sent this really helpful information from Fenetic Wellbeing to help me consider my options. Just in case this sounds like you or someone close to you, hopefully you will find this information on Fenetic Wellbeing Mobility Scooters helpful or be willing to pass on this information too.Mobility Scooter Infographic from Fenetic Wellbeing via www.familymakes.com

Disclosure: This is a collaborative post with Fenetic Wellbeing

If you have any further information or advice for me as I come to terms with my mobility issues, I’d love to hear from you. If you are willing to share your stories or experiences, either here, on social media, or privately with me, I’d love for you to get in touch.

Thanks for listening, thanks for being there. I know I don’t often talk about my personal issues, and I appreciate the opportunity to share them with you.

Thanks for listening. Let's support each other when we can.
Thanks for listening. Let’s support each other when we can.

 

ethannevelyn.com

 

44 Comment

  1. Sorry to read that your back pain is so bad. It’s awful when a medical condition disrupts your life. Take care xx

    1. Thanks Sam, I’m kind of used to it now, but I was hoping it might improve. Never mind, onwards and upwards!!

  2. Oh this have been so hard for you to hear. Good for you for facing all this with such positivity and drive for life. Like you say there’s no point waiting around – but just thinking about what will help you to live life to the full. xx

    1. Absolutely Rosie, sitting around feeling sorry for yourself takes up too much precious time. Get some wheels and get on with it! That’s what I say!

  3. Sorry to hear your news but I’m sure you will soon have a resolution to mobility issue and your resilience will carry you through. Parking should become easier for you with a disability parking badge. Which ever mode of transport you go for I’m sure you’ll soon be “tarting it up”

    1. Thanks Kate, I can see bunting or maybe a pirate flag…! Although I’m not sure you can do that when you borrow a scooter at the local Asda!! Haha!

  4. I’m so sorry to hear they can’t operate Carol. If you haven’t already, can you get yourself a disability badge? I’m sure it would make your life easier. My friend suffers from Crohns Disease and has a badge – she’s only 30 and can’t be more than 100ft from a toilet. Disabilities are not always apparent for others to see are they?! Loving the infographic by the way. And great you’ve opened up and shared an insight into how life really is – it’s cathartic! xxx

    1. It is cathartic Lauretta, although not usually my style! I don’t have a blue badge, if I’m honest I can’t face all the medicals etc that go with disability claims. But I think I need to apply now .

  5. It’s hard to accept but actually the use of the chair or scooter gives you freedom. My husband has a chair and without we couldn’t get around at all without using hire chairs at supermarkets or so on. It gives us freedom to to travel. Without the chair we couldn’t have travelled to Canada, Iceland, Italy, And more. We wouldn’t have seen the Northern Lights, the Rockies, the Coliseum. Or even a theatre trip to London. Whilst his diagnosis of “you’ll be in a wheelchair permanently within 10years” hit us hard 8 years ago, the wheelchair has been the saviour. Wishing you the best with it and travel as far as you can with it.

    1. Thank you so much Vicki. You’re right, it does give you freedom and the same for me, without hiring/borrowing wheels in various places, I would have missed out on so much. Sounds like you have done some amazing things together!

  6. Oh I am sorry to read about all of your back pain. Back pain is the worst. My has a degenerative back condition and can be in agony with it. I think there are now some fantastic mobility scooters out there.

  7. I am sorry to hear about your back. I have a few friends who are in similar positions but I personally, don’t have any additional information to give you. I have seen some of those new scooters around and have heard good things about them. I wish you the best:)

  8. I don’t know if you are disclosing your name on this blog so I won’t use it. I have known you for a long time … 34 years and ever since we met you have always had some sort of health problem. Your positive outlook on life is an inspiration to me and whenever I’m having a moan about petty little health issues, I think of you. We don’t mind sharing your struggles and although we don’t see eachother much I’ll always be here. Drifting around in cyberspace. You know where to find me friend. Lots of love xxxx

    1. Thanks Cheryl, I know, I’m a walking disaster area!! In fact you’re right, I’ve never had great health for one reason or another, but I’ve had some cracking good times anyway! Thanks for your lovely words, and for always being there xx

  9. So sorry to hear about your back pain – you positive attitude towards it all is very inspiring 🙂

    1. Thank you so much Helen

  10. It must have taken a lot of courage to share your story and sorry to hear about your back and reduced mobility.
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    1. Thank you Anosa, that’s kind of you to say.

  11. That is a tough diagnosis but at least you know now there is nothin else that can be done you so you look at options around you. I also suffer with chronic pelvic pain and while I have more mobility than you the pain level really gets to me. I’m also in a ‘there isn’t much else we can do’ place and now I’ve come to terms with it I’m in a much better place.
    All about a Mummy recently posted…Book Review: Leaving Time by Jodi Picoult + Giveaway!My Profile

    1. I’m sorry to hear you are suffering too. It’s hard to hear you’ve exhausted all options, but as you say, once you come to terms with it you can move on with your plans. Good luck with managing your condition x

  12. You are handling it so well. You have a strong spirit, please keep it up. Lots of hugs..

    1. Thank you Nafisah, that’s kind of you to say.

  13. If having a mobility scooter or wheelchair is going to allow you to do things and go out then it’s a great option to have. I hope you make it to Edinburgh zoo x

    1. Thank you Rhian!

  14. Sorry to hear that-hope you find a scooter that helps you to get around x
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    1. Thanks Catherine, it’s quite easy to hire them in various places these days. I might need some driving lessons though!

  15. Sorry to hear of your health issues. I think that it is amazing that you have such a positive attitude though. Wishing you all the best and sending hugs your way x

    1. Thank you so much Jayne for your kind words and hugs x

  16. Hi Carol, I went on holiday to Benidorm with your Auntie Margaret in June, she has a bad back and poor mobility and I have had a problem with my knee for quite a while. We both decided that we couldn’t get to see much if we had to walk so we hired mobility scooters. It made our holidays, we were able to explore Benidorm and shop until out hearts content. I would say to you ‘Go for it’ and get your independence back. Hope this helps, love Auntie Denise xx

    1. Thank you for your lovely comment, and I’m so glad you both found your independence and had a lovely holiday. I’m taking a lef out of your book xx

  17. Sounds like you are having a really tough time and I’m sorry to hear that. Well done you though for not letting it beat you!! xx
    Lisa – The Love of a Captain blog recently posted…Our Wedding Day: The FlowersMy Profile

    1. Thank you Lisa x

  18. I’m sorry that you have to think about and consider this. #FabFridayPosts
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  19. Oh I’m so sorry to hear you’re in pain and to hearty stuggle on a daily basis.
    Kelly-Anne Combes recently posted…HOSTING THE PERFECT GIRLS NIGHT IN…My Profile

    1. It’s tough but it just requires a change in mindset I think x

  20. It’s never easy to get a diagnosis – sounds like you are managing well though. Big hugs. Sarah #fabfridaypost

    1. Thanks Sarah, I bounce back haha! Thanks for the hugs, well needed and much appreciated x

  21. Hi Carol, I’m so sorry to hear about your diagnosis. I have osteo arthritis in the base of my spine and rheumatoid arthritis almost everywhere else. I’ve been attending our local rheumatology clinic at the hospital for almost 20 years now. Even now, at each appointment, there is always the hope that they’ll have found a magic pill that can make it all go away… I’m such an optimist 🙂 At university I used to run, I belonged to a hill walking club, now I can’t walk to the bottom of our street and every single day has pain in it.

    Pain doesn’t define us spoonies though Carol. It doesn’t, and it can’t ever be allowed to either. It can, and sometimes is a royal pain (literally) but there are so many coping mechanisms, ways to get around things. You mentioned scooters, they are a fab way to get around. I don’t have one yet but I know that it’s in my future somewhere and whenever I do eventually have to get one you can bet they’ll see me coming because I’ll “Rosie” it all the way into next Tuesday and it will look FABULOUS! When I was forced to start using a cane I was so embarrassed, hated to be seen with it. It’s a switch in our heads, that’s all. A tiny attitude change. Somewhere along the way I decided I needed this cane so I might as well have a Rosie cane and dare people to make fun of me! So I bought an electric blue, “could be seen from space” kinda cane and the boost it gave me was wonderful 🙂

    A lovely nurse once said to me “fight the battles you can win.” She wasn’t telling me to stay home and avoid the world though, she meant to do the things I knew I could do because from those things I would gain confidence and would do more. Baby steps. Don’t see your diagnosis as a disaster Carol,it’s a positive in that you know where you are, now all you need are coping mechanisms, like maybe a jazzy scooter and a rocking cane that can fold and tuck away into your handbag (I have two bright jazzy floral ones 🙂 Take on the world on your terms and kick butt! You can do it! Sending heaps of hugs xx

    1. Rosie, thank you so much! This is the most motivating thing I’ve ever seen. You’re right, we try to not let it define us (that’s why I don’t talk about it much on my blog). I’ve been overwhelmed by the positive response though, and I feel much better about getting out and about, even if it does sometimes involve mobility aids. I love your positive attitude. Thanks for your brilliant comment, and I wish you well x x

  22. […] the staff informed us. This filled me with dread, as you may have read previously about Cal’s mobility problems. However, she was carrying a heart monitor and deliberately trying to make herself symptomatic for […]

  23. I’m so sorry you didn’t get the answers you wanted at your appointment. I think it’s great that you’ve written this article for yourself and to raise awareness and help others! Thanks so much for sharing with #Blogstravaganza xx
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  24. Firstly, well done for sharing such a personal story – I’m sure it will help other people in a similar position. Secondly, I’m so sorry that you didn’t get the good news you were waiting for, I can’t begin to imagine how disappointed you must have been. I really hope that are able to find a way to enjoy the sorts of activities with your children that you want to – you sound incredibly strong and positive despite the terrible setbacks! #blogstravaganza

    1. Thank you so much for your kind comments. We mostly manage ok, one way or another!

  25. So sorry to hear this Carol, you are one gutsy lady being so open with your diagnosis xx I really hope you can continue to enjoy days out with your family despite your say back xxx

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