It's that time again, time for me to ramble and for those of you who read my ramblings to raise your eyes heavenwards and tut loudly.
I have had a rough few weeks and as I always do I have drawn back into myself whilst my head tries to get some understanding of what's changed and what it means for me.
This is about my health again and the twists and turns it is taking me through as it progresses and first I fight it, then I deny it, then I (hopefully) understand it and lastly I attempt to accept it.
What does disability mean to you?
Someone who has problems with certain things? Mobility maybe
Blindness/deafness
Some sort of physical problems and the pain etc associated with that.
Rightly or wrongly I guess that is where I placed myself and my condition, the skin disease means I have problems with sore hands/feet/ears etc
The arthritis means my joints are stuck/swollen etc
And of course the pain caused by these things are what I considered to be my disability. It was this disability that forced me to stop working, stopped me from being able to drive and so on......
So I accepted that, accepted my limitations and continued on with my life as best I could.
So where does being ill fit in?
I don't mean a cold, the flu or any one of the numerous illnesses you can have and recover from in weeks or months, I mean a never ending worsening illness that is connected to your medical condition.
Consider this....you do too much one day and please bear in mind that 'doing too much' for me now was just doing normal things a few years back, anyway you do too much one day and then for the next few days you're ill, not a bit tired or weary but physically too ill to go out or even get out of bed.
Other symptoms like headaches (temporal arthritis)
Side effects from medications you need like nausea, dizziness, lethargy
Infections that follow one another through your body
Abscesses
Overheating so badly that I stand outside whilst hubby shivers in a sweater.
Hang on.....these aren't what I signed up for, these aren't disability
These are symptoms of an illness
But I don't want to be ill, I don't want to have a chronic medical condition that makes me ill.
(Ok that's the foot stamping over)
I went to talk to my GP as I was having some pretty rough side effects from new Meds she had wanted me to try and whilst she agreed some of it may well be down to the Meds she also asked what else I had been doing for the few days previous to feeling so rough.......
Well, I had been busy that week, stayed at father in laws for four days, went to hospital appointment on day five and then to see my parents.....so?
So Penny you are not accepting your 'chronic condition' is progressing and you are at times not going to feel well.
It IS a chronic condition/ disease and it does make me feel really rough at times but I had been finding every other possible excuse to explain it away rather than look at what was really happening to me, why?
Because I had a hard enough job coming to terms with being unable to do things due to being disabled without accepting that the disability is down to a chronic medical condition that also makes me feel so ill at times.
I can almost see those of you in the know shaking your heads, it's the chronic condition that caused the disability, they are one and the same thing and the progression is what I need to accept and deal with.
Ok, don't push me, I will get there in my own good time and in the meantime I shall curse and scream at what's happening to me so cover your ears my friends.
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4 comments:
You write so well. I find my own answer so pathetic in comparison for what can you say that you have not said.
I was very slow on my run today, cursing my legs, in a small way, for not being as fast as my other running friends. Will I ever run a ten minute mile I said to myself.
I have been tired since starting my new job-role, in bed by 10. I feel frustrated that I have not as much energy as I want to sometimes.
THEN, I read this and I feel really humble. Humble and glad that I can walk without pain, let alone run, feel tired after an honest days work, not just when trying to do basic tasks.
I think your blog tells us that we all take health for granted. We want perfection and for many this process of ageing and illness and disability takes a cruel blow too soon when too young. We all expect to grow old and see our body fail, that is hard enough, but when we are still reasonably young we don't expect it.
I do hope the meds straighten themselves out. I am at a loss for words, have no answers and feel helpless for you.
However, from your weakness you write great strength and courage and that in itself is your legacy. You body may be failing you but your hands still type and your mind is still strong.
Keep going!!
What an excellent comment from onethoughtfulwoman. It is so easy when you have a chronic condition to feel as you do, the frustration, the sense of deep loss on so many levels, the 'why me?', the 'why can I do so little now when I could do so much?'. The fact that you never feel well, there always seems to be something else going on that makes life even harder.
The excellent comment serves as a reminder of how special you are, how brave, strong, stubborn and most importantly how hard you fight. To do things despite what it will do to you, doing things even though you feel like death. just battling away when your body is screaming that you stop, give up, give in, let it win. Roll over.
Sometimes we need to be reminded how WELL we are doing. Celebrating the fact that despite being disabled in whatever way that may be, we carry on and make the most of it. There are so many out there who would be completely unable to deal with what you put up with. You're special....xx
Hi Penny,
I feel almost exactly the same as you, reading it, and seeing it, out in front of me in your blog has made me burst into tears, something I haven't done for a very very long time. But crying is something I have needed to do, as everyone keeps telling me "just let it out".
In fact since I started crying twenty minutes ago I am still struggling to hold back the tears now. So I apologise that this comment is not going to be anything poetic or intelligent or helpful, I just thought I'd reply to tell you that I feel the same, I'm scared though if I'm honest, that's how realising all of the horrible things that we go through makes me feel, scared. Scared because if this is how I feel when I actually let myself 'feel', then how do I move on and accept, how can I/you accept something that not only do we not want but we can't stop. We can't just say "I've had enough now, can you please take the pain away and let me resume my old life". Anyone reading this will probably be thinking, you have to adapt and accept otherwise you'll never move on.
Going to sound like a spoilt child/teenager but I don't want to accept and move on. I want to get better and not be like this. I always thought I could handle any challenge life through at me, but I don't think anyone could truly handle being in pain, disabled by pain, being alone all day, having a mind that no longer functions like it once did due to side effects, and all the other side effects our medication causes us.
I am sorry that I'm replying without being in anyway helpful, I don't know the answer either. But now for my best trick to get away from the sadness...distraction...
I didn't know you are a Dr of Psychology, I have a degree in Psychology. I had planned to do a masters straight after graduating, but unfortunately this all started just after, 3 months after I had finished studying, 3 months after I turned 21, just as my adult life was about to start. I hate, with such a passion, what has happened to me, I go through it almost everyday in my mind, 'why me?', what did I do to deserve this, how in this day and age can the medical world be so completely useless on this, and many other conditions.
Hopefully having this cry and moan will help with the acceptance we need to face. Once again I'm sorry I haven't been of any use, hope you find maybe some comfort in knowing that you aren't alone, although I'm not sure how much that will help.
Anyway I best put on a brave front/face and get onto twitter and the website to join people together, I hope nobody ever thinks that I am some kind of 'leader' type figure running Chronic Relief, because I'm really not, I'm exactly the same as everyone else, suffering, looking for support.
I truly hope your day improves and that others can be more useful than I.
xxx
Thank you all for such kind and understanding comments and Robert I don't need you to make me feel better, I am so very pleased that you feel you can share your feelings and fears with me, it makes me stronger knowing that I don't go through this alone. If this blog reaches out to just one other person that feels the same way then it is doing what I set out to do, if it informs one other person what life is like for us then it is doing what I hoped it would.
Robert life hasn't and isn't being fair to us my friend but like you I am buggered if it will beat me. Xxx
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