Things which have helped me on my journey


With thanks to Kimberley Richardson (Model) and Phillip Corps (Flowers)

*Learning to accept things as they are now and to stop feeling bad when I am unable to do things.  Also, not worrying about what people may or may not think about me when I have to cancel things. Initially I remember thinking that people will be thinking how lazy I am……which is another thing I have learnt (or am still learning!) not to second guess what someone else is thinking of you!!!

*I try where possible not to plan things for early in the morning as this is not a good time for me, due to the meds I need to take and often getting very little sleep during the night because of the neuropathic pain affecting both my legs.

*If I plan something in my diary for the afternoon, then I keep the evening free as I need time to lie down and re-charge so to speak! Therefore I try and only put one thing in my diary per day, and if it is something that I know is going to be a challenge for me, then I give myself a ‘rest day’ in between. In short I ‘pace’ myself and I am also far more realistic as to what I can and cannot do now. Although to reach this stage, it has taken much trial and error and even now, I do not always get it right!!

*Learning my own boundaries and trying wherever possible to stick to them has been key for me….and also learning to be kind to myself on bad days or when flare up’s occur. On these days I let people around me know, as I often do not feel like being sociable.

*I am learning to laugh at myself when I struggle to do things, such as putting on footwear which now has to be flat, I often use an extended shoe horn for ease. Or reaching down to pick something up from the floor which at times is near on impossible, I’d be lying if I said it wasn’t frustrating at times……some people in their senior years appear to have better mobility than me which seems a tad bizarre, however, just because I am younger doesn’t give me an automatic pass to have freer movement!

*I now have more of a focus on what I can do as oppose to what I cannot do!

*I have a lovely little pill case which my Mum brought for me and I always make sure I have the necessary tablets with me when I go out, and I take a few extra in case I end up being out for longer than expected.

*Learning to relax has also helped me no end (hard to do I know when you are in pain but it is achievable!).  A good one for me, is lying down on the bed with the support of a V Cushion and a pillow under my knees (this helps to support my back). I sometimes play some relaxing music (or even just have the telly on low in the background – whatever works for you). Having closed my eyes I then ‘scan’ over my body so to speak, to see which parts feel tense and I am holding on to. I then focus on my breathing and gradually I find things release and I relax… takes time to do initially but once you have mastered it, you can bring on relaxation relatively quickly! I find this especially helpful when I am unable to sleep due to the pain.

*My dear cat Milly has been an amazing support and she is my ‘fur therapy’ as I call it….I am not for one minute suggesting that people rush out and purchase themselves a pet, however if you do have them, or can look after them, then they are just amazing!!!

*My trusty microwaveable Bean Bear has been a great help, even if only as a source of comfort (always follow the instructions before using!).

*I found that at the beginning of this journey onwards, my social life dwindled down to pretty much zilch because of the pain, lack of mobility and the meds I was on. As time went on, I found myself shying away from social encounters and felt as though my social skills were disappearing!

Gradually, I began to do little things like going on a walk with family/friends, or to a pub for a drink, and gradually as my confidence grew, I built this up to going out for a meal. Each place I go to, it’s a case of first things first…… scour the venue for appropriate seating – soft easy chairs a welcome sight to most, are now a total nightmare for me, as are chairs that slant backwards or have a thick rim around the edge (these bring on the numbness in both legs and leave me looking as though I’ve had one drink too many when I attempt to get up!!!). Places that have cushions are also a bonus as it saves you taking your own and you can discreetly place one/two where you need the support – not quite so easy mind if you are on a date!! I also try to avoid busy places and go out with people who understand how things are for me, they have now got pretty nifty themselves at spotting where’s good to go or sit J.

*Even if the hobbies you once had can no longer be done (for me it was socialising till the small hours and attempting some silly dance moves on the dance floor; hopping into my car and driving to wherever to visit friends of a weekend; going to the odd Harley Rally and being a pillion, cycling, kayaking, going to the gym for a really good workout and doing breast stroke) it is important to replace these with ones you can do!

*Exercise is also key (even on bad days)…..for me I try and go on regular walks (relatively flat surfaces only); going to a local pool which has proper steps, by this I mean in place of ladder steps! I have now replaced my much loved breast stroke with back stroke and I am re-learning to do front crawl; I have yet to perfect this!!! I also do exercises in the water which is great, as the water supports the weight of your body. Yoga has been a great help too, and I really notice if I go a week without it!

*Seeing friends and making the effort to go out even if only for a little while, has boosted my confidence and self-esteem no end, and one of the best tonics (other than the odd tipple) I’ve found however cliché, is to laugh – it really does help and feels so good and for that brief moment in time distracts you from the never ending pain.

*I still find it hard at times when people ask how I am, as often it’s out of politeness and if I was to say how I really was, their jaws’ would most certainly hit the floor! It is also hard, as people think you are going to ‘get better’ and so these questions can become rather tedious although asked with the best intentions. I tend to just say ‘I am doing ok, could be better but could be worse’ and move the conversation swiftly on. People often struggle to understand when something is on-going, I do however speak to a few people about things, as this is crucial, it keeps me sane and true to myself.

The Psychologist was great for this; people often fear Psychologists or Counsellors but I would say – if you get the opportunity to receive this support then grab it! It may or may not work for you but is definitely worth a try. I found it really helped to ‘normalise’ my feelings and adjust to the major life changes I had recently under gone. I often cried during these sessions but I think doing so in a safe and supportive environment really helped me. Like so many, I am not someone who wishes to wallow in self-pity however, I do now understand more than ever, how important it is to acknowledge your feelings, which in turn allows you to move on.

*Whenever I sit at the computer, I now use a medicine ball to do so, this is a great help to me as I am not putting any pressure (or very little) upon my coccyx, which is a huge problem area for me pain wise. I alternate what I am doing regularly to try and prevent aggravating anything unnecessarily.

*To drive I have adjusted my seat accordingly – including: lowering the height of the seat to accommodate my coccyx wedge cushion (I am aware that with certain cars the seat height is non-adjustable); I have moved the seat closer to the steering wheel (not so my knees are touching the steering column), and I have the seat in a somewhat reclined position which helps with my back and leg pain, to a certain degree. I know my limitations with driving, including how long I can drive for as my legs go numb, and my back becomes very painful after a while. I also listen to when I feel able to drive due to the pain and medications taken. I naturally try to avoid driving in rush hour when possible!

*I have just had my first weekend away since June 2010, which was such an achievement although not without its difficulties, but I was fortunate to have gone there with a dear friend who is so understanding and supportive.

This has given me the confidence to think about maybe going away further afield in the not too distant future……..however it has made me think about the following:

If on a long, or relatively long car journey I would need to stop at regular intervals to stretch my legs.

If flying abroad, flying from the nearest airport; ensuring if I was going alone someone at the airport could help me with my luggage. On the plane I would need an aisle seat or seat near an emergency exit which has additional leg room, I would also need to remember my cushions too!

I would need to ensure the transfer time from the airport to the hotel was relatively short. If a beach/pool holiday I would need to find out ahead what the sun beds are like as if they didn’t go right back flat this could present a real problem for me. Most places do have showers, but would need to check as sitting in a bath is still a no go for me. The terrain and how hilly the place is would also have to be taken into consideration. So there would be lots to think about, not least making sure I had comprehensive travel insurance!!

I have recently been referred to as the ‘Queen of Health and Safety’ not the best title to have but I guess it is one that is well earned, as a slip/trip or fall wouldn’t be great! I never thought at the age of 37 I would be thinking about things like this, but hey ho that’s just life I guess! Although it does make me realise, and appreciate even more now, just how lucky I was to have done all the travelling and exciting activities I did when I was in my twenties.

*And lastly, but probably most importantly, knowing that I can still have dreams and aspirations, just different to the ones before!

The above is what has helped me and everyone will be different which is something to bear in mind when reading this, however some of it may be helpful J.

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