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muladzh Profile
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Changed perspectives


Six months ago, I thought life was going well, Froggy seemed happy, I wrote every day, we enjoyed going out, and we planned new windows. Time went on, we bought an IQ car, that we drove 5549 miles. Life really was good. Then Froggy got ill, and the remission that I had enjoyed for years, expired.

Now, I sleep behind locked doors, and Froggy sleeps elsewhere, because she prowls at night, often with very confused motives. She has hurt me a few times, fighting because she couldn't remember who I was, Pulled me out of my wheelchair twice, and kicked me innumerable times.

Now my Froggy, the girl I rescued years ago, the girl who stole my heart, and lived with me through fantastic adventures is gone, replaced by a now less truculent child. Yesterday she belligerently snarled that she did not want to go the toilet, and instead soiled her diaper.

The power-chair makes my tremors considerably better, at least now I can write, but only at a much slower rate; I can at least work, though it now takes days, when it used to take hours. My brain still works, unlike Froggy's, so I see a changed perspective of out world, that she cannot see, I see the heartache, and the lost happiness, she sees demons and devils that plague her, and not much else.

She follows me around like a puppy, so close I fear that I will run her over with my three hundred pound wheelchair, that contains my three hundred pound body. The floors of the house object to the six hundred pounds plus that roll over them all the time – when I can afford it, I will get the floors strengthened, just to be on the safe side, particularly as the permanent wheel chair, the massive six wheeled $15K monster weighs in at 450 pounds. I don't think the floors will take seven hundred and fifty pounds rolling over them, so I need to buy an indoor wheelchair, and keep the monster to use outside.

The bank approved an emergency loan, to purchase a wheelchair van, equipped with a lift capable of loading the seven hundred and fifty odd pounds of me and chair. But they limited me to $23K, a paltry amount for such equipment. A company that deals in such vans searched for a week and found one that I could afford, in Georgia. They brought to the house for me to see. A 2000 Dodge 3500 Maxivan, set up as a clinic's minibus, no passenger seat, but able to carry five wheelchairs. 67K miles on it, a couple of rust spots, and no automatic door opener - that, along with a transfer driver's seat, and the lift, with remote controls, brings the cost up over the $23K - because to qualify for the loan, I have to pay off my other auto loan, so must trade in the Expedition – I can't get in it any more so that doesn't matter. It doesn't matter that it is the first vehicle that I specifically went out and bought, with the specs that I specifically wanted.

I have to sell my beloved Jeep too - it is stick shift - I can't manage that any more, but more importantly I can't get into it any more. People kindly tell me I shall recover. They wish it, I wish it, but I know the reality. I see the future - that is what I do, I am a Seer, and I don't recover. Shame I did not look to see when it came back. That would have been useful. Froggy does recover, eventually, that keeps me managing, but it takes a long, long time.

I am fortunate in that the debility that plagues me, also keeps my muscles toned, so nothing will atrophy. This means in real terms, that the early death of most wheelchair bound people is unlikely to befall me, because I will retain much of my strength, though this is not guaranteed.

Life is a fragile thing, that will be forever changed in a moment, or two. At least I knew of the possibility that my condition, HKMD could and indeed would, return, and I am used to getting around in a wheelchair - I can reverse a power chair onto a ramp, I can manoeuvre inside a bus or a van, without hitting thing - most people that find themselves in a chair take time to learn this, and life is difficult until they do - I learned 20 years ago, when malice put me in the chair to start off with.

I sit here, typing slowly, wondering if today will be trouble free, or trouble full - Froggy still sleeps behind closed door, I don't want to wake her, because the fight about the bathroom happens, she may, or may not have a dirty diaper on. Her soiling of them is not accidental - she does it to annoy. I am dreading the day she decides to remove the diaper. The hatred she displays when told to go to the toilet is frightening.

At least she is eating now – but will only use the fork to feed herself, if I am eating. The moment I stop eating, she stops, until I feed her, when she grins, and eats away. She happily steals whatever I am drinking - if I put it down, she pounces on it. Getting her to clean her teeth is difficult to say the least, so anything her mouth touches becomes unpleasant, so I lose what ever I put down. I cannot get into the main bathroom, and she can no longer use the en suite bathroom, as I have to keep her out of that bedroom, or she will damage something, or soil something again. Most days, I think she hates me, then she hugs me and tells me she loves me: I wonder if she means it.

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7/20/2014, 12:03 pm Link to this post Send Email to muladzh   Send PM to muladzh Blog
 
Firlefanz Profile
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Re: Changed perspectives


*sending you lots of hugs*

I'm amazed how you adapt. That is very good. All the best for you and Froggy. I hope you can get some independence back and that Froggy "grows up" again.

It sounds as if someone used to punish her on the toilet ... hope she can grow out of that, as well

 emoticon emoticon emoticon emoticon emoticon

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- Firlefanz

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Re: Changed perspectives



Life is a fragile thing, that will be forever changed in a moment, or two



I know this all too well....

I'm at least relieved you know what is going on with you and have been through and can deal with the issues that arise.
I only wish Froggy could be helped....
It breaks my heart that the dear little lady who helped me once, is gone...and that my friend must deal with this loss while having such a rough time as well.... emoticon emoticon

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“Freedom and democracy are dreams you never give up.”

7/21/2014, 5:36 pm Link to this post Send Email to Queenyforever   Send PM to Queenyforever Blog
 
muladzh Profile
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Re: Changed perspectives


Just what I feel, Beth - She is gone, but hopefully she will return to me. If she doesn't I don't know if I have the strength to deal with that.

I am worsening - spasticity is growing - if I exert any force, I lock up. fortunately that does not occur when I am calm and not exerting muscular pressure. I can hardly wait for my van - that is a form of relaxation for me - I am never calmer than when driving.

My tremors have subsided enough, thanks to the power chair, that I can use the mouse for correcting mistakes.. emoticon emoticon so easier reading.

Over the weekend, we had SIL here, to help. Now the hard time starts, she will be back on Friday, until then, I am alone with a gone Frog.

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7/21/2014, 7:46 pm Link to this post Send Email to muladzh   Send PM to muladzh Blog
 
Firlefanz Profile
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Re: Changed perspectives


I want to send you confidence ... the Frog will come back.

I can almost contact her, I think. Still sending love.


 emoticon emoticon emoticon emoticon

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- Firlefanz

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7/22/2014, 9:01 am Link to this post Send Email to Firlefanz   Send PM to Firlefanz Blog
 
muladzh Profile
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Re: Changed perspectives


Yesterday was a bad day..

I managed to get three hours sleep last night, and am worn out, feeling worse, stressed out of my mind.. What a life.

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7/22/2014, 12:40 pm Link to this post Send Email to muladzh   Send PM to muladzh Blog
 
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Re: Changed perspectives


Nothing I can do but send you love and support.... emoticon

---

“Freedom and democracy are dreams you never give up.”

7/22/2014, 8:17 pm Link to this post Send Email to Queenyforever   Send PM to Queenyforever Blog
 
muladzh Profile
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Re: Changed perspectives


Today went well, I spoke with Becky for a couple of seconds - she said she would call back.....

Frog has been compliant today - maybe because I have locked the doors and she hasn't got a key. I managed to sleep some more, so don't feel so bad as this morning. The lack of conversation is the worst part - I want to talk to somebody!!! I am alone in a wheelchair, with a silent empty person nearby. I have not actually spoken with Froggy for a month - it hurts.

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7/22/2014, 8:48 pm Link to this post Send Email to muladzh   Send PM to muladzh Blog
 
Firlefanz Profile
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Re: Changed perspectives


*sending hugs* Not sure if you can make Skype work. I would chat with you.

  emoticon emoticon emoticon emoticon

I believe the Frog will come back. She's very smart, though, and you have to make it the smart solution for her to come back...

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7/23/2014, 8:52 am Link to this post Send Email to Firlefanz   Send PM to Firlefanz Blog
 
muladzh Profile
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Re: Changed perspectives


I will try get a microphone connected to the mac at the weekend, then see if skype will work for me - I need to chat with somebody sometimes. I don't have a web cam though......
no calls yesterday, or the day before, etc etc.

It is pathetic how the friends we made last summer no longer come visit - or call. I told them of our condition and they don't seem to know us any more. People try tell me that I need to understand how I make people uncomfortable - What the fk for? how do they think I feel? morons.

We did get a visit from the window guy - he brought us some veggies from his garden and stayed for half an hour chatting. His assistant has fractured his pinkie, so the work we would like doing can't be done yet. Because he couldn't do the work when he said, he has cut the price.. He didn't seem to mind the wheelchair.

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7/23/2014, 11:29 am Link to this post Send Email to muladzh   Send PM to muladzh Blog
 


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