Finding Time to Manage

In an ever progressive world, time seems to be the only thing that everyone seems to not have enough of. With new gadgets and technologies being made daily, with promises of making our lives easier, how is it that we seem to have less and less time as the years roll by? To me at least, this is one of life’s many mysteries.

For someone suffering with a chronic illness this is only made worse by the restrictions in which it inflicts. Living with Ankylosing Spondylitis (AS) has taught me a lot about time management. Before my symptoms reared their ugly little heads, I was able to do what I wanted, when I wanted, in whatever order I wanted. If this meant a late night then so be it, I was young, and perfectly capable of coping with sporadic changes and stress. Unfortunately that is no longer the case, and I’m sure many of you have had a similar experience.

Learning how to change your routines can take quite a lot of effort. The things we used to do routinely without a second thought, not only now need forethought, but on occasion take a considerable amount of planning. How many of you have to plan ‘breaks’ between certain tasks around the house, as your pain levels rise, or stiffness beds in? I know I have to.

Of course there is a simple answer to these problems, you could always get someone else to do it, no? Well this may be an option for some, ‘paying a guy’ to help with the gardening, decorating or odd jobs is something that is culturally the norm in the USA. However; this is not yet the case in the UK, with pride often taking president over common sense. The British ‘carry on’ mentality is not always a practical or an intelligent way of thinking. But with the current economical climate it can be difficult to justify the expense of ‘paying a guy’. In fact it might be completely unaffordable, given a significant number of chronic illness sufferers are unable to work, relying on benefits just to pay the basic bills.

Charities like the NASS offer helplines for information and support, but who is going to help you with your grocery shopping? Do you have to depend on family, friends and neighbours to help you? Having support is crucial for your emotional and mental well-being, but this dependency can feel a burden at times. You may feel this is putting stress on your relationship with person, but what other choice is there?  As with many problems you encounter in chronic illness, it would be fair to say it’s a Catch 22 situation.

We all need help at times, and admitting that is not a sign of weakness, despite what your father may have told you. Recognising your limitations is key in helping you deal with your condition, but is just as important when trying to manage your time effectively.

Do you find you have to plan your day out around your symptoms? Do you often find have jobs that are left undone at the end of the day, as your illness didn’t allow you to complete them? What tips would you give to someone who is struggling with their time management? What strategies have helped you? Is there a charity or service in your area which can help other chronic illness sufferers that you want to share with others?

Let me know your experiences and thoughts.

4 Replies to “Finding Time to Manage”

  1. Frankie Dean

    Hi I have ankylosing spondylitis and the above is exactly me. Things are very difficult and because of my illness and also being a social outcast because I am gay too in a rural narrow minded society I have little if any support a couple of friends make a good effort and I appreciate that so much and others just think Im lazy and deserve my lot or they are ok jack attitude . I really want to do stuff to be the same as others and I am doing my best to do whatever I can do to work and bring in income and look after myself. I am in so much pain and can hardly do basic things people take for granted a lot of the time. I often wonder why it all happened to me but there is not really an answer to that. I cant interact socially or take part in a lot of things to make my situation better because this illness devastates all areas of life by its effect on work because employers dont want you full stop does not matter if you have the best qualifications they just see the AS and the effects it has had on your career. This leads to lack of income and inability to interact socially or to manage basic needs. This in turn leads to a cycle of the AS getting much worse through stress and lack of basic things like an adequate level of heat or decent food. Which then makes it impossible to do things to make things better and break the cycle. You cant ask friends to help as you get socially detached and then you are scared to lose friends if you do ask for any help. If you have no family like myself you are on your own and this makes the fight against the AS and circumstances even harder. Also if you do make relationships it is very difficult when many times when they find about the AS then they dont want you even if you try and explain AS cannot be passed on to them . I only make a way because I am a musician and performer and I try and find something in my music and the few things I manage to do and because I have not got anyone I appreciate people more and just love everyone even if they dont love me. I just cut off people who are making trouble because it is not good for the stress and AS cycle. There is no charity or local support for people with chronic illness I get a little support from others I find online the same people to talk to and people who are even worse than me to remind me my lot is not as bad as it could be and keep me on a level heading. It is important with AS to try to find a place to settle where there is services and where you can access facilities and activities easily so the AS monster does not isolate you and increase its work. Because I am in three minority categories Gay Perceived as coloured and disabled I get abuse and could be subject to attack at anytime and this additional stress and worry increases the AS severely and impacts on opportunity much more. The way I cope is an attitude of too pot with people be proud of who you are and someday I am going to beat this!

    • whiteleyvon

      Your story is sad and unfortunately common. I used to write and perform music myself and it is a way to share your emotions and find solace. Good luck my friend, the fight goes on 🙂

  2. Shelly

    Well said my friend. At the end of the day do much is “unfinished”. I have assigned days to chores. One or two major things a day. Such as laundry vaccuming and the such. I even plan one day a week to just “play”. My advice for time management is this know what needs to be done make a list of priorities. Then at the end of the day celebrate what I did get done, and know that tomorrow us a new day.

  3. whiteleyvon

    Time management. I’ve always been awful at it. But like you, when I was younger, it didn’t matter as much- or at least, there were not any health complications to deal with.

    Coming to terms with AS has been difficult for my family and I. Not only has it at times been lonely for me, but my partner has also no doubt felt lonely and isolated at times. Coming to terms with a life changing disease can sometimes feel like a full time occupation itself, so how are we supposed to get on with everything else in life!

    Do I have any tips for time management? I guess if I had to think of something I’d have to examine my own difficulties in keeping up with this busy life… I’d say my main issues are around appointments, medication deliveries and the logistics of all the additional tasks besides the day to day stuff that we all have to do (cleaning, laundry etc). And the only way I can manage to keep up with it all is by actively using my calendar. Now this is where the tech bit comes in. I love my tech and have my phone and tablet stuck to me 🙂 Any and all appointments and general things I need to do and remember go on my Google calendar, available to view anytime, anywhere. I’d honestly be lost without it!

    I suppose what i’m trying to say is that it’s important to get all the stuff involved with maintaining our treatment sorted before we get stuck in to the more mundane tasks that we all have to try and fit in at some point. For many of us, without the treatment life would be even harder, that’s why personally I have to make sure I’m meeting all my treatment based obligations as a priority.

    I am of course very lucky to have a hard working partner to support me and keep me (mostly) focused. Now all I need is the national lottery!

    Thanks for the thought provoking blog Ricky 🙂


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