Urgent Attention! Grandparents, Parents, Children, Grandchildren, Aunts and Uncles

[flybro]

I'm writing this in the hope that it will help some people understand, and avert the possibly catastrophic out-come of an enthusiastic, positive outlook.

A couple of days ago I nearly passed out on the stairs, I was carrying the cat down as he had had a fit. I felt a bit wobbly at the top of the stairs so did my usual on my bum routine.

I had been feeling quite rough so put it down to foolishness, I should of known not to try the stairs. The
Orthostatic Intolerance(OI) or Postural Orthostatic Tachycardia Syndrome (POTS) was stronger and lasted longer than it ever had before.

Anyway a couple of days of being pretty much grounded, and a lot of bed rest and sleep, I woke up feeling fantastic.

I honestly felt I could have run a marathon, I was full of beans. So when my granddaughter woke up before tea, I went up stairs to get her, my partner offered but I was feeling great and insisted I get her because I love seeing her when she's just woken up.

Everything was fine, got up stairs easily, picked her up, put her on my left hip so I could hold the banister on the way down. I got to the top of the stairs and thought it would be wiser to go down on my bum. Thank God I did.

We went down each step one, two, three, little one counting along with me. Less than half way down I started to feel feint, I called my partner. My daughter asked "are you OK Mum?" I answered with calm breezy, "Yeah fine", just as my partner came around the corner and took Molly, I stayed sat on the stairs holding onto the banister.

The thing is I was convinced that I was well enough and strong enough to look after her. I also felt I could predict when I was likely to get OI indoors. I would have encouraged my daughter to go and visit with a friend, and my partner to go visit with our eldest daughter who is due on the 20thMarch, while I keep Molly at home with me.

Thank God my daughter was unwell and that my partner felt she should come back earlier than planned. I don't know how long I could have sustained holding on to Molly and staying conscious. This has been the scariest moment in my history with this disease.

I was distraught afterwards about the 'what ifs'. I'm totally shocked to realise I put my granddaughter in danger. I feel so stupid. It never once entered my head that it could be that strong and without any warning, especailly indoors. I truly feel we had a lucky break. Hopefully my lesson will serve as a timely warning or lucky break for many others.

If you are a parent with toddlers please show this to the rest of your family and to anyone that may be able to grant you support. If you are a grandparent please show this to your children, and be aware that our optimism and enthusiasm can be dangerous to those we love.

Oh and we need more bungalows.

 

[Carrigon]

The thing that really strikes me is how you said you thought you could do it. This has been a huge complaint of mine. The disease is deceptive. So many times I will think I'm well enough to do something, and then it turns out I can't do it at all. But I really believed I could. That's what freaks me out. I will believe I am well enough for whatever task it is, then I go to try and do it, and I can't. It's such an awful feeling. Just knowing that I'm worse than even I think I am.

 

[BEG]

flybro, What a terrifying experience for you. This nearly fainting thing is scary stuff. Being a grandmother myself, my heart goes out to you. They are so adorable when they just wake up. I know how much you wanted to be with her. How old is Molly? I'm so glad your partner and daughter were still in the house when you needed them.

My O.I./P.O.T.S. has progressively worsened over the years. Thankfully, many years back I was able to put in a chair lift to get me to the second floor. The stairs are an impossibility for me. When I first got it, my granddaughter would ride in my arms. When she got a little older, she would ride the chair herslelf. In fact, she would go up and down the stairs laying on it (the arms of the chair go up) kind of like Peter pan flying around.

I hope you can change sleeping arrangements so Molly can be nearer to you.

 

[Sing]

Yeah, this disease is deceptive. I hang onto bannisters now every time, not just due to light headedness but to a foot suddenly dragging. It seems as if whenever there is something possible to fall down or trip over, I do. The memory and cognitive tricks are amazing too. I can make things disappear with the skill of a magician. I also bump into things, drop and break things. Living alone, this can be dangerous.

The other night I fell over a baby gate, gashed and bruised my arm, and wrenched my leg and back so that at first I couldn't get up at all. Luckily I survived this with no worse damage than the need for two days of lying down. But like you, flybro, this was a powerful experience of my physical vulnerability. The night after the accident, I dreamed I was in my grandparents home and both the spirit of my mother and father came to see me. I felt cared for more than ever. I guess this accident was symbolically like birth, a fall down over a baby gate, headfirst into a crash. Only this time I was aware of both my parents and grandparents in a sense being there to help. I mention all this to show you the caring compensation and response that came in to help. I am hoping that my consciousness will stay raised and I will find better care.

 

[Mithriel]

A dreadful experience

This is one of my worries about the advice to push ourselves more. Pushing only leads to a more dramatic collapse.

When my children were young I had to push the pram down a step hill. I always had this vision of my hands losing their grip and the pram running down into the road. I would push it at an angle an zigzag down :Retro smile:

It was a relief when I was too ill to push my grandson. Though it turned out he loved sitting on my knee on my wheelchair so that was good.

I gave up driving lessons when my leg refused to move onto the brake and I almost crashed.

Mithriel

 

[BEG]

Yeah, this disease is deceptiveThe other night I fell over a baby gate, gashed and bruised my arm, and wrenched my leg and back so that at first I couldn't get up at all. Luckily I survived this with no worse damage than the need for two days of lying down. But like you, flybro, this was a powerful experience of my physical vulnerability.

Hi Sing, It gets more difficult to pick up our feet when we walk now, doesn't it? Sometimes the energy is so gone, I just shuffle if I need to walk. We should call it the "CFS Shuffle." While its always nice to have a visit from deceased loved ones whom we miss so intently, in your case, I hope you have many friends and connections around you. Take care.

 

[flybro]

Thanks for all the comments,

I just cant stay away, I was supposed to saty upstairs today and couldn't do it.
It just feels plain wring not to spend time with her.

But we have a tempary solution.

We've decided to baby proof the top floor so I can spend more time with her without the stairs being a problem. Happy Me.

We also worked out today that the multi-chemical sensitity is adding to the prob. My daughters shampoo and possibly littluns bathwash being the main culprits.

We love the space our home is in, we've got pretty good neighbours to. However we only have one loo which is on the top floor.

Another problem is heating the house, we have that awful warm air heating, where the hot air from burning gas is blown out through vents along with what looks like soot. We have baorded the upstairs vents off and use oil filled plug in radiators in the bathroom and bedrooms. The warm air, soot and dust still comes upstairs but I have a door curtain that keeps most of it out of my 'clean' room.

I know we really should try to find alternative accomadation, but moving looks like a really steep upward climb.

The 'wheelchair thing'. This sounds ridiculous, but my ego is definatly getting in the way of accepting using a wheelchair.

The redcross lent us one, we've had it for nearly 6 months. I've used it twice, once to the hospital for blood tests, and once at 1 am in the morning when it was dark. LOL

I still have not been outside this year.

I dont have the strength to propel the wheelchair myself so would be reliant on others pushing me around. its as though the whole wheelchair thing is too big a pill for me to swallow.

I want to i just dont seem able to.

Cheers

 

[Sing]

Close calls! Thank you, Mithriel and Brown Eyed Girl. Flybro, I hope you get outside in the fresh air and daylight when you want to and to heck with how it looks in a wheelchair. Better to be outside one way or other, is how I feel.

I do have friends, only not living with me. My upcoming hip surgery the end of April will prove revelatory, I'm sure. Some friends have offered to come by and help, for which I am deeply grateful. I've never been helpless, but post surgery ??? Am trying to prepare.

I am grateful that we can share pretty intimately about our limitations and feelings here.

Sing

 

[Mithriel]

Flybro, people use cars to take journeys they could walk in an hour or so because it would take up too much of the energy they could be using for something else.

The wheelchair is a tool, nothing more. I felt terrible when I first used a walking stick. I thought everyone was looking at me and thinking I didn't need it and was a fraud.

By the time I needed the wheelchair I had been stuck in the house for almost a year and I was too excited to get out to notice. I was lucky, I know how hard it can be.

You are going to need that chair if you are going to share your granddaughter's life. It will only feel strange for the first few times, people will get used to you and you will be able to have FUN. :Retro smile: The park, the playground, the carnival, the nativity plays, it all awaits you.

I see you are in the UK. You can ask to be assessed by an occupational therapist, either through your GP or the social work department. They look at need not the name of your illness. I have a stair lift and an electric wheelchair though I bought them myself. (Thanks to the DWP who had a pile of back money to pay me after all the appeals and tribunals, yay!)

It is a big step to make going forward but looking back you wonder why you bothered.



Mithriel

 

[BEG]

Sing, Good luck with that hip surgery. Is it a replacement? Please let us know how you fare.

Mithriel (pretty name), My chair lift allowed me access to my 2nd floor (half the house!) after years of not getting up there except on very rare occasions. That was an investment well worth it. My husband currently pushes me in a wheelchair when the situation warrants it. I would like an electric wheelchair or scooter for the independence. Do use your wheel chair in your home only? Do you use it publicly? If so, did you get a ramp for your car? I'm struggling with that idea. Would like to hear of others experiences.

 

[Mithriel]

I only use a wheelchair in the house occasionally as the shape of the rooms are not very suitable. I tend to stay in one place unless I am up to walking :Retro smile:

My power chair is designed to come apart easily to go in the car boot. I paid extra to get one which my daughter can do and which comes apart and builds up in a minute or so.

I have a ramp up to my house so I can go out on my own. I use to go to my mother's, the library and a craft class on my own but I have got worse also lost my nerve a bit. I am hoping to venture out again this Summer.

Having the power chair is almost as good as walking for the independence it gives. We had some lovely years when my grandson was young and we would all go out for the day. I often had to sit outside shops. My husband will go in and wave things for me to see. :Retro smile:

I am lucky because soon after I got my chair the OT arranged for me to go to craft sessions at a disabled centre, long gone due to cutbacks alas, but it meant I mixed with a lot of the disabled. I still go to an MS therapy centre and my best friend has walking problems due to cerebral palsy. It is amazing how quickly you don't see physical problems so I am less self conscious than I might have been otherwise.

Mithriel

 

[creekfeet]

Good warning. My kids are teens so I don't have to worry about carrying them, but I do worry about leaving the sicker one home alone. Sometimes I have to and it scares me to think of the accidents that could happen.

 

[Sing]

I only use a wheelchair in the house occasionally as the shape of the rooms are not very suitable. I tend to stay in one place unless I am up to walking :Retro smile:

My power chair is designed to come apart easily to go in the car boot. I paid extra to get one which my daughter can do and which comes apart and builds up in a minute or so.

I have a ramp up to my house so I can go out on my own. I use to go to my mother's, the library and a craft class on my own but I have got worse also lost my nerve a bit. I am hoping to venture out again this Summer.

Having the power chair is almost as good as walking for the independence it gives. We had some lovely years when my grandson was young and we would all go out for the day. I often had to sit outside shops. My husband will go in and wave things for me to see. :Retro smile:

I am lucky because soon after I got my chair the OT arranged for me to go to craft sessions at a disabled centre, long gone due to cutbacks alas, but it meant I mixed with a lot of the disabled. I still go to an MS therapy centre and my best friend has walking problems due to cerebral palsy. It is amazing how quickly you don't see physical problems so I am less self conscious than I might have been otherwise.

Mithriel

Mithriel, I really appreciate hearing your positive attitude throughout your description of becoming someone who uses a wheelchair. It "walks" me through a set of steps which in one way or another I may need to take as well, and shows me that life continues on the other side. The new possibilities for friendship and sometimes activities such as the craft center make it seem hopeful.

I am now making a new male friend who has been disabled for some years and benefiting from his acceptance, kindness and compassion. In a gentle, low key way we can share life a little. There are nice people on the other side of "Disability"! This has been frightening me as if it were a death decree, but life shines on the other side too.

Sing