Tonight I shall post some of the negative feelings that this week has brought up. Paint a picture of how waiting is for me, the restrictions and pressure that waiting has caused.
What is it like?
It is like drowning a few times every day.
Fighting your way to the surface,
hoping you will reach it.
Every day you have to consider what you can do,and what you are unable to do because of your breathing.
In the past the summer was my favourite time of the year a time to swim, walk in the countryside, a pint in the pub.The good weather signalled barbecues and fun with the family.
Now a barbecues and fires make breathing impossible, swimming would quickly turn into drowning, walks in the fields would lead to back problems for my wife pushing my wheelchair as any distance walking is impossible,A pint in the pub is no fun any more as the alcohol depresses my breathing and drunk and breathless is not a good combination.
Fun with the family is becoming harder and harder and as the kids grow they are forced to leave me and do things alone as getting parking near a lot of things is impossible.If I am with them I can watch them have fun.
The practicalities are numerous;
- where will you park, will there be a space?(not occupied by people who are too lazy to park anywhere but a disabled spot.)when I go out I need to stay near to my car
- Have I got enough oxygen with me?(a portable bottle lasts only 2 hours use)
- Have I got the wheelchair?( someone to push it?)
- Have I got inhalers
- Will there be toilets? (I am on diuretic tablets and need frequent visits)
- Have I got mobile phone my ever-present friend for when I get the call to transplant (can I get a signal)
- Have I had my tablets
- Have I had my Nebuliser (I take this three times, sometimes more)or will I be out to late for it
- Will the day out last later than about 10pm when my breathing requires Oxygen constantly supplied by mains powered machine
- As you can see days out are a pain when I come along. So I often find I have to stay at home and not slow everyone down and any place requiring walking are a no go.
- I have great problems with stairs and the walk upstairs at the end of the day take a great deal of drowning noises inter spaced by curses and individual steps are taken with a rest inbetween.
- Then there is my oxygen tubing this trails around the house following me like a tail and everyone has must be careful not to trip on it.
- When I am using my oxygen in the evenings and overnight is the worst I feel trapped and even moving around the bedroom cause me to become uncontrollably breathless.
- I can't cook due to the heat and cooking fumes and I love to cook.
- I can't help with housework as I get to breathless.
- I can wash myself but it takes ages and washing and hair washing produces bouts of breathlessness that are hard to bear at times even with oxygen on.When I am breathing badly a shower on a seat across the bath with assistance is required.
Some people I have talked with this week are worse than this.
When I had an infection last summer I was also.But the worse part about this situation I am in is the effect that it has on my family.
My wife is a nurse and has looked after people all her life but the stain of having a husband who is unwell is wearing her down not though the practical issued but the mental effects and stress I see the look in her eyes and am powerless to help
The effects on the kids are numerous.They are unable to go out without a phone as I may need to contact them should the call to hospital come.I cant do the things with them that they would like to and the stress is ever present.they are lovely kids and I wish that I could do something to help but I cant.particularly when they are out with me they worry, having seen me have a Pneumothorax where my lung deflated.
My children think I may get unwell again and I cant be sure.
I push that out of my mind for most of the time.
But at other times I cry with despair and fear for the future
I deal with things like a recovering alcoholic one day at a time
Anyway If you have made it this far in this post respect to you not many people like to read about illness as it forces us to confront your mortality. Now I will ask you to do just that, If you die would you really want to let your organs go the waste in the ground or polluting the atmosphere as more greenhouse gas?
Please consider signing the organ donor register and save another life when you have gone. After all we don't know what will happen in the future.This is the most selfless gift you could give to another human being be a hero and give the gift of life finally If you do sign the register please add a comment to this blog to let me know even if you don't it is nice to know someone is listening.