Independence Part 5: Coping with losing your independence when your sick or disabled

This is the final part of my series on independence, however when I started writing on the subject of Co-dependency I thought of another topic in relation to that, whether I will add it to this series or put it as part of another I don’t know yet, but for now this is the final part.

Some might think reading this that I have no authority to write about this particular subject after all there hasn’t been a time when I haven’t been disabled.  But I believe although I may not have the qualifications or expertise to write about this subject, I’ve had to learn to adapt to the world around me with the disabilities that I have, I’ve also seen others find it difficult to come to terms with their lack of independence.  I’ve had people comment how well I cope and I think if that is a lesson to people maybe I can give a few tips, maybe in their own minds if they see me manage they may be able to do so too.

I feel for those whose independence has been removed from them abruptly as a result of illness or disability the road is often much harder whereas someone who knows a condition they have is going to get worse is not a great thing to live with but at least you have more time to come to terms with it and better timing and resources at your disposal in order to prepare for the eventuality.

1     Acceptance

Much of the way to deal with losing your independence is down to our thinking.  Acceptance is the first step, accepting you now are disabled or sick is vital for you to progress forward, that doesn’t mean you should define yourself by your disability or sickness, or even have it as part of your identity.  That disability or sickness  doesn’t own you doesn’t belong to you but it is something you have to learn to live with. By the way when I say it doesn’t belong to you I mean you didn’t choose it.  You don’t have to let it control your life either.  But you do have to accept that it’s there that it does change your life that it does give you limitations.

2     Do get angry

It’s ok to be angry about this change to your life yes be angry that you no longer can walk the distance you used to, you can’t read the paper anymore, you can’t pick up the cup with your right hand without spilling the contents, that’s fine.  Yes be angry when people are being rude to you or ignore you and treat you like a second class citizen, but process that anger properly.  Vent your anger on your own  or share it with someone who would understand.  As time goes on you may find that the length of time you are angry about a situation is a little less each time as either you learn to adapt or you get a tougher skin round others who may be unpleasant or who lack compassion.

3     Be honest when your not coping

It’s normal to feel depressed too, understandably you may have been through a trauma before your sickness and disability and now your having to adjust not only what’s happened too you before this happened but now adjusting to the outcome.  Don’t hide the fact your struggling to come to terms with your disability or sickness, let someone know or speak to a counsellor about your fears, anger and tears,.  It’s not a shame to be sick or disabled but it is a shame to hide that pain away from those who care about you.  They may already know that your not coping and it may be a relief to them for you to share that with them.

4     Get all the help you can

Get all the support you need from healthcare/social services professionals and any charities related to your condition,  Find support groups where you can go to and obviously if your reading this there will be social media support groups linked to your condition.  There are benefits available for people who are sick or disabled, don’t be ashamed to take them .  The government has made provision for them,  undoubtedly you’ve paid your taxes or national insurance  in the event of this happening so you will be entitled to take them, these benefits will help you be more independent.  The money may pay for you to get a cleaner if you need one or a support worker, to help reading your mail or take you shopping  or a qualified carer to deal with your hygiene needs, to give that family member a break.

5    Get adaptations

There are plenty of adaptations available on the market these days, from large print clocks to specialist gardening equipment, which means you may still do the things you want to do with the right equipment.  I for instance have screen magnification software  on this laptop so I can read the print on the screen, I have speech if  I need it too, I can change the size of print, the size and shape of the cursor and even the contrast of colours  if need be.  Some adaptations can be got through social services such as a chair lift for the stairs, or a  hoist for a bed.  There numerous products out there that will make it easier for you or a family member to be more independent.

6     There is hope

Just because you are now sick or disabled it doesn’t mean that your life is over, for some your life may have just begun.  Don’t try and run before you can walk, pace yourself, laugh when things go wrong.  It is possible to work when you have a disability I worked for 13 years in a media business,  just be honest about your limitations and what you need and you should survive.  In order to work you may have to learn new skills, colleges and University’s should have support workers and adaptable equipment for courses.   You can still travel but you can book assistance you can get someone to help you on and off the train, they provide wheelchair assistance on and off trains.  If you can’t hear very well anymore you can get adaptable phones, so you can still communicate.  There are many people who have learnt to adapt to their particular illness or disability so can you, as long as you are patient with yourself in your progress you can learn to adapt, don’t compare yourself to others in their progress whether they are doing better than you or worse, don’t give up, when things are tough, just remember you are not alone, many HAVE been in your shoes before you and many will still in the future. There will be good days and bad, there will be days when you may take two steps forward and two steps back.  Count your blessings, you may not be able to speak the way you used to but you can still see and hear the people around you and hug those close to you.  Other parts of our bodies can do the things other parts can’t anymore but in a different way, there’s a lady who can paint with her feet.

I know this may not be a comprehensive response to cope with losing your independence, but my tips above are a starting point, if need be follow my blog, I have my good days and bad days too, it’s not a bed of roses being sick or disabled but there are plenty of things to laugh about.  I’ll end with a funny story.  One of my relatives had bought a motorbike, he took us to show us the bike in his garage, well I took a photograph and what I took was not of the motorbike but of the lawnmower! Bye for now 🙂

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Letting Go

I was sitting on a train home following a visit to my friends and I thought I saw someone I knew, only from behind, I kept wondering is it them or not, my curiosity was really strong, I was thinking I wish they would turn round then I would know for sure, I wouldn’t want the embarrassment of mistaken identity which is a common thing with Vi’s.  But it got me thinking laterally about other things. my plans and dreams, I knew that I’ve got work to do once I returned home in relation to those things, but I found myself thinking  specifically about the need to let go.  Letting go of the fact that some of my dreams and plans may not come to fruition.  The application form for a course I want to attend I may not be accepted on, this blog may not flourish, the new fb group I’ve created may not gain the momentum I want it too, my current voluntary work may not lead to anything more than it is, therefore it was time to let go.  Also time to let go of not being able to be the kind of friend I want to be to some people, to let go of my expectations of others, of not being the most charismatic individual around.  The list goes on.

Of course I’ve had to let go in the past sometimes I’ve been in no other position but to do so, the death of my mum in 2012, my job when in 2013 the company I worked for went bust.  Believe me those were painful experiences.  But this time on the train I felt these were just clear choices.  The thought was in my mind does it really matter if these things never come to fruition or bear fruit.  So what if I don’t get accepted on the course I want to do would it really be the end of the world?  What about the relationships I have with those around me and my expectations or theirs is it such a big deal?  The fact that I don’t always feel valued and understood by those around me is it really necessary that I need to explain or make myself understood and be valued?

Strangely I felt a smile spread across my face at the thought of letting go, because letting go can mean letting other good things in, there are no limits, we often think our options are limited if we let go,  our fears are that if we let go nothing else will come in its place, hmmm.  Does this mean I should not do what I can to make things work such as this blog and the rest, of course not, my passion for the things I have in the pipeline are still valuable, but passion fuels me to do what I do but it doesn’t rule me.  So I’m  left with a sense of peace about my future after all often we are afraid of the future and what it entails.  I can still make effort with my relationships with the people around me without allowing what I think they need from me to control me.

I rather see my life being like a tree, a tree cannot grow new leaves without shedding some dead ones, but in the place of those leaves new shoots of life replace the dead leaves.  In other words my life has stuff that’s not right  or good in it those things get shaken off and new things or better things come in their place.  I just have to trust that when things die or don’t work out new green shoots will form and grow and produce life and if things don’t work out it means better things are ahead or adaptations need to take place.   Another analogy is the passage where Jesus talks about the seed that has to fall into the ground and die before it bears fruit.  In my case I’ve seen that happen.

In Feb 2000 I got offered an opportunity to do some work for a company I wanted to work for, but it came to nothing, my then pastor mentioned that scripture I mentioned above  that was already confirmation to me, I let it go.  Nine months later I got offered a job at that same company and stayed there for 13 years.  So letting go can be a good thing and it brings peace.

Ok so back to my original  starting point.  So now you maybe wondering did I get to find out if who I saw on the train was the person I thought it was?   Well when the  train finally pulled into my final destination , the assistant met me just at the door of the train, he walked me to the bus stop where I could wait for my bus.  I’d been standing there for a few seconds then I looked to my left, walking away from me was the assistant talking to the person who I thought I recognised on the train, unfortunately again it was from behind so I have no way of knowing whether the person I saw was who I thought it was, and it could have been a different person entirely to the person I saw on the train  so that will be a mystery to me and something I have let go of , so now you will have to let go of knowing who It was I thought I saw 🙂

Independence Part 4: Interdependence

In my previous blog posts we have covered what independence is, the irony of it Co-dependence and now we are covering interdependence.

If we want to be independent but we can’t be truly independent what are we left with.  The answer is interdependence, which is mutual dependence.  A friend of mine got confused with the terms when they thought co-dependence was interdependence.  The difference between the two is that co-dependence is over dependence or reliance on someone else and it’s not necessarily mutual.  Mutual dependence means that  you assist one another in becoming independent by supporting the other person or people where dependence is necessary.

I think a great example of this is in a good working community where everyone understands each others strengths and weaknesses.  For example there are two people one is a middle aged man the other an elderly lady.. The  gentleman  is extremely good at gardening but can’t so a button after his wife died, the elderly lady is no longer able to garden due to arthritis in her knees but she can still sew.  The man who can do her garden will equally be supported by the elderly lady’s ability to sew some trousers or buttons on a shirt. It could be that the elderly lady can teach the gardener to sew themselves and the gardener can show the elderly lady other ways to garden independently without bending down, this could mean the gardener can landscape the garden so there’s very little bending involved, or only have a garden with trees or hanging plants in.  This kind of example could be practised in other ways throughout the community.  A parent who has a car can give a lift for someone who doesn’t have a car in exchange for baby sitting duties.  If the person getting the lift was a teenager they can be taught to drive by that parent and the teenager can assist the parent on maths or IT if they are at adult education classes.

I personally think one of the reasons why so many people rely on welfare or rather have to rely on welfare is that the notion of community has largely disappeared in our modern world, although I believe it seems to be desired.  I know that churches and organisations are setting up projects within neighbourhoods, towns and cities in the UK in an attempt to address this shortfall.  But one of the reasons this is not happening is probably down to trust, can we trust someone to assist us who we barely know?

The place to start I think is in the family unit and try and extend the interdependence model outside of the family unit.  If your not a part of a family unit try and join a community project where your skills and strengths can be utilised and also get support for the things that you need support with, or the things you can teach others.

Now one important thing I want to address, disabled people are the ones that are often seen being the ones that need help, but apparently have nothing or little to offer, this is nothing further from the truth.  Many disabled people are crying out to be integrated into their communities, they have an awful lot to offer, life experience, flexibility, problem solving skills and that doesn’t account for the many other things.  Many of the disabled people I know are more than willing to give to their communities and some have had the opportunity to do so, one of my visually impaired friends, runs a choir for children in their community for instance.

So in conclusion look out to help others and be mindful of the fact that others are willing to help you, but don’t become dependent on people and do things not expecting anything in return no one likes people doing things for ulterior motives. But if someone has helped you in the past be sure to find ways of supporting them in return somewhere down the line, hopefully they weren’t looking for anything in return. Let’s hope we can learn in the future to find ways to not fear to depend on one another without becoming users or becoming over dependent on people. Not to be afraid of asking for help either, knowing that we may be able to do something in return in the future.

I hope this blog post and my others have given people food for thought.  My next blog post will be the last post in this series it will be on coping with losing independence as a result of illness or disability and how to adjust,

Independence Part 3: Codependency

In my series on independence, I’ve covered what it means to be independent, are we really independent, now I address a more complex subject that is relevant but difficult in many points.  At what point does dependency become co=dependency?   Let’s try and define co-dependency, by it’s nature it’s tricky, simply put  it’s when dependency has  gone too far.  Now before I go any further I want to say that co-dependency is necessary for some, but I’ll elaborate on that further later.

Co-dependency is mostly seen in abusive relationships or when someone has an addiction.  The persons needs become damaging to the relationship, either way both sides of that relationship there are benefits.  The roles of victim and saviour come to mind, the person playing the victim needs rescuing a saviour comes along to save them, the victim needs a saviour and the saviour needs someone to rescue, the saviour is drawn to people who are needy who they can help the victim simply suck the very life of the individual making demands, becoming manipulative, intimidating and controlling.  The rescuer or saviour has a deep need to be needed and relishes helping that person but unfortunately does not help them become independent, they continue to allow them to need them.  This link has  a great blog post on the 10 signs of a Codependent relationship, she has put it in a much better way than I could have done.  http://www.mindbodygreen.com/0-17039/10-signs-youre-in-a-codependent-relationship.html

One thing she brings out though which is very valid is the role of fear in a relationship, if the relationship is based on fear or your needs are fear based that’s a strong warning sign all is not well.  One thing worth pointing out is the rescuer is often afraid of letting go of the victim, they are afraid of what would happen if they “abandoned” the victim in their apparent neediness, this is particularly apparent where there is an addiction involved.  I’ve heard different people talk about what they do to assist their relative who had a drug/alcohol dependency, they are often scared of letting go because they think that person will hurt/kill themselves, but never consider that actually that person may come to their senses in those circumstances, or someone else may come along who may not become their next rescuer, but be able to have the strength to say no to their co-dependency, which is often hard.  Let me say I’ve been on both sides of the fence, thankfully the victim  side a long time ago, I now don’t need anyone in a sense, and I don’t need to be needed either. There is absolutely nothing wrong with having needs as long as they don’t become demands or they breach healthy boundaries.

Now I come to the more tricky issue of those who are sick or disabled. By very nature they will be more dependent than the average person and may even become co-dependent because that sickness or disability has not happened to them by choice and coping mechanisms are not easy to learn.   First to the person that has a sick or disabled family member or partner, don’t be afraid to ask for help when it all becomes overwhelming.  If your starting to feel resentful that may be a sign you are either doing too  much or examine why your doing something.  I know from personal experience that a disabled person doesn’t want to deal with someone who feels resentful for helping you.  But neither should the disabled person go without support if needed, here communication is necessary, if you feel you are doing too  much for that person, tell them but don’t be brutal about it.  For instance, If your constantly taking that person everywhere by car leaving little time for yourself just tell that person that your willing to help them but do they know anyone else who can help too, or even suggest someone you know who would be willing to help, most disabled people do not want to be a burden so sensitivity is crucial in these issues, equally to the person with a disability or sickness, be sensitive to people who help you, encourage the person assisting you the most to let you know if things are getting on top of them, and try and find others who can support you, don’t try and rely just on one person. be fair, be reasonable but above all respect that persons need for their own time.  In this situation It would be rare that a sick/disabled person is deliberately taking advantage of your help, just communicate when you sense things are starting to get out of hand. Obviously bear in mind if someone has very severe sickness or disability they will be co-dependent for instance if they have Alzheimers, in those circumstances  do  not be afraid at getting professional help.

If you are in a relationship that is suffocating, give yourself some space and think about what is happening.   Are you happier when your not in it? Are you the one squeezing the life out of the other person or is someone doing the same to you. If either is happening give yourself a break from that relationship or end it if you are in a position to do so, and get counselling or support.

In summary I would say

1     Have healthy boundaries in your relationships

2     Communicate when things are getting on top of you either way.

3      Seek help and counsel if things get difficult

4     Take a break if things are getting on top of you

5     Learn to say No to unreasonable expectations or demands

6     Recognise where there’s fear in your relationship

7     Don’t beat yourself up if you’ve been on either side of the equation it’s possible to change.

In Part 4 of this series I will be covering the topic of Interdependence 

 

 

The quote that got me thinking 

Late last night I do my favourite pastimes bath book and bed I call it BBB 🙂 Anyway I was finishing a book I’ve been reading called Gaining heaven’s perspective: A guide to hearing and seeing the voice of God by Julian C. Adams, something he said got me thinking.

God is more interested in your relationship with him than you waiting for his commands

What a quote, it sent me back to the time in a church I was in many years ago when there was much emphasis on obeying God’s commands, it rather reminded me that the person who used to say it the most saw God as a sergeant major.  I believe that the image of God we have determines what sort of relationship we have with him.  It reminds me of the passage in Matthew 25 from verse 14 about the different people been given possessions by their master how they viewed him caused them to respond in kind.  The man who was given just the one talent just hid it saying that his master was harsh the others used what had been entrusted to them and got more, knowing their master trusted them, each of the people responded according to what they believed the nature of the master was and what they believed about themselves.

For many Christians they see God as a harsh TASKmaster waiting for their next command instead of knowing God trusts them in using what they already have been given by him whether it’s their brain, finances, gifts or opportunities.  Interestingly the master was away for long time away from those people’s presence leaving them to make choices without interference, he trusted them.  Also when the master returned he was pleased with how those people used those talents, they showed him, he was proud of them, God is proud of you. enjoys your gifts and talents.

In conclusion I would say God is not a harsh taskmaster issuing commands rather he is a loving father who gives to us and enjoys what we do with what he puts in our hands, the result will be based in what we believe about him, if we believe he is good, kind and loving there will be fruit, if not then their will only be mistrust of the one who gave us the things entrusted to us.  That doesn’t mean the father won’t direct or guide us, he will if we need it and he will correct us if we go off track, but comes out of a position of trust.  People who are neither trusted or respected have to resort to commanding people to do things for them rather than if they are trusted people will naturally seek them out for direction or guidance.

To any reading this Father can be trusted, he loves, enjoys and celebrates you, he gives good gifts and trusts you, don’t be afraid to seek direction and guidance from him, but if he doesn’t answer your probably doing well he’s not into micro managing, he trusts you.  He will probably most likely encourage you to keep going.