# Out for a bit of a day



## aldra (Jul 2, 2009)

What the hell is wrong with me

Ok I know I have flare ups and can't walk

Today I could, well around the house

So went to collect new glasses, a quick trip to B&Q , I need a rug , not what I wanted

And my hips were on fire

Or were , few glasses of wine and peace

So should I settle for a shorter life? In pain during the day 

Pain free in the evening, can't take anti inflammitory drugs because of kidney function

But alcohol prob isn't that good either for the kidneys

Struggling with loss of independence 

I can manage at home during the day, but struggle with the housework , and that's important to me ,but I'm getting really bored

I loved homemaking, 

Daytime TV doesn't do it 

The van, well I view it with mixed feelings

If I'm well, without flare ups ,I still can't get far, I no longer walk the dog 
with Albert, I need to exercise but how ?

Confidence has dropped, I no longer drive, if the car door isn't fully open I can't get out

Albert drops me off before we park, normal parking areas don't allow the door to open 
fully

Well that's me, I've moaned enough 

Sandra


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## Grizzly (May 9, 2005)

PM on way Sandra...I hope anyway.


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## javea (Jun 8, 2007)

Just read your post to my wife Sandra. She says that is her to a tee.😢

Mike


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## jiwawa (Jun 22, 2007)

I feel for you Sandra. Finding our horizons shrinking is very painful. 

Alas, I've no advice. 

My sister was recently put on chemo drugs that made her life not worth living, she felt. She's decided to take her chances with the possibility of heart attack/stroke and have a much better quality of life in the meantime. 

Who knows if that's a wise decision....


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## JanHank (Mar 29, 2015)

Have you tried alternative medicine Sandra?


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## HermanHymer (Dec 5, 2008)

Aww Sandra, so sorry you're suffering. Hope it will pass soon. Big hug. Love


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## aldra (Jul 2, 2009)

Mike a really feel for her

The loss of independence is really hard 

I feel the need to exercise as I feel muscle tone is slipping , even limiting calories loses weight but not flabbiness, but how as I no longer seem to work?

But most of all I want to homemake, not just struggle through the day

The van no longer appeals, it worries me, could be OK , but most of the time Im trapped around it, I cook, Albert walks the dog alone, sometimes we set off and then I struggle to get back 

The most comfortable place for me is in bed, it reduces the pressure on my joints but it's not recommended long term so I avoid it

The worst thing is the medical profession seem quite happy to inform me no inflammatory relief, no medication to halt the flare ups and reduce the immune reaction but don't feel it necessary to explain what I should do to relieve the pain and gain back my life and some security that I could actually plan an outing 

I doubt they would recommend alcohol

Well they say it's the kidneys

So meanwhile do I just swim until I sink?

Sandra


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## HermanHymer (Dec 5, 2008)

Sometimes one has to push for a solution, for some form of pain ease.

On my b-i-l's THIRD visit to the pain clinic (for severe unremitting pain) they gave him a relaxation CD, and on his 4th visit (still no pain relief in sight!) he replied to their enquiry as to how the CD worked, "it would have been more useful if I'd broken it in two and slashed my wrists with it". Only then did they start taking him seriously and go to work on a pain relief solution.

Time to get dramatic Sandra!!! Make a fuss, cry, throw a tantrum.


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## aldra (Jul 2, 2009)

HermanHymer said:


> Aww Sandra, so sorry you're suffering. Hope it will pass soon. Big hug. Love


It won't pass Viv

Unless I have a flare up I can manage OK in the house

But I can't get out much, can't clean the way I used to, and yes that's important to me

I can't assess how long I've got away from home until I can manage to get back

And how long it will take me to recover, usually a day

Anti imflammitary medication used to help to control it

But now it's forbidden

I'm just frustrated, so many are coping with much more I know

Sandra


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## aldra (Jul 2, 2009)

jiwawa said:


> I feel for you Sandra. Finding our horizons shrinking is very painful.
> 
> Alas, I've no advice.
> 
> ...


Who knows

Fortunately for me its not a life and death decicision I have to take,

But she has

And taken it

One hell of a sister you have there jiwawa

All my love and admiration to one brave, wise woman

Sandra


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## Grizzly (May 9, 2005)

PM sent again- I hope !


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## patp (Apr 30, 2007)

Sandra, there are specialist pain clinics for people in your situation. My daughter is a Physiotherapist and she tells us that they have all sorts of solutions up their sleeve. Some are alternative some are main stream but not prescribed routinely because, sometimes, of the cost. Well worth asking for a referral to one in your area.


From your mobility point of view take a look at Clinical Pilates. It is not the recreational sort of Pilates. It is run by qualified physiotherapists and each patient is given an individual assessment and then a set of exercises that are tailored to their particular condition. They change as progress is made. 
I started them for my sciatica and Chris (the least likely person to try anything!) saw my improvement and joined the class recently. Can not praise them enough. You do have to keep going. Our one does six week block bookings so that we don't give up on a bad day. Other people on the course have made huge strides in their mobility too. Even if it just helps with your homemaking it will give you a mental lift.


Another one to think about is Acupuncture. A - maze - ing! Usually offered by physiotherapists but some doctors are converts too. Or there are specialist ones that do nothing else.


Also hydrotherapy is good for improving mobility while joints are supported.


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## aldra (Jul 2, 2009)

JanHank said:


> Have you tried alternative medicine Sandra?


I'm about to Jan !!!!!!!!, in the form of an oil, from a reliable source to guareentee the quality

Sandra


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## barryd (May 9, 2008)

I feel your pain Sandra. Can you swim? Do you have a gym with a decent swimming pool, Jacuzzi, steam room, sauna? What about a bit of swimming for exercise followed by some relaxing in one or all three of those mentioned? Some gyms do water based exercise classes as well. You will feel you have earned your wine after that.


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## aldra (Jul 2, 2009)

I can swim Barry, or could 

Used to swim daily at 6 30 am before all this started then I just let my membership lapse

Getting there is the problem, I need a disable badge to open the door of the car wide to get out/in

Albert would take me but he's off on a ten mile ride every morning on his bike

I suppose I got fed up of paying gym fees when I couldn't get there anyway when joints flare up

Will see how things go, at least I have a jacuzzi bath here but find it increasing difficult to get in or out of it 

Told you I'm ready for the knackers yard !!

Sandra


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## patp (Apr 30, 2007)

From my understanding you should qualify for a disabled badge Sandra. Why not apply? Seems a shame not to continue with something you used to enjoy.


Do consider hydrotherapy though. They heat the water to a much higher temperature 


Another thought - when daughter was a baby we used to hire the swimming pool at the local special needs school. Several of us mums clubbed together. Again the water is heated to a much higher temperature than a sports pool. The school was glad of the extra revenue and us mums were glad of the heat as we bounced around with our little bundles of joy


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## suedew (May 10, 2005)

Sandra, could't 'like' any f your posts, wish there was an 'oh dear' or 'oh bu**er' button. So sorry to here of your mobility and (lack of) pain relief problems.
Agree you need to start insisting something is done, don't ask, demand to be referred to a pain clinic, don't know about your area, but here we can self refer for physio.
My 2nd husband, had chronis severe back pain, our gp was an accupuncture convert. Taught me how to do it, only suitable for Frank's condition. It really did make a big difference to his life, he used a tens machine too.
Do hope you get it sorted.
Hope the special oil works, if that doesn't, try a cake ;-)


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## barryd (May 9, 2008)

You definitely should get a Blue Badge Sandra. I would say you more than qualify for one.


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## aldra (Jul 2, 2009)

I think I will apply for one Barry

If only to use the disabled space at the side of the door

Albert stops and let's me out before he parks 

And reverses out to let me in 

On the rare occasions I go out , usually to the supermarket 

If I can walk I'm stiff and anxious 

It's stupid I know

Around the house I feel safe, stiff and unsure following regular flare ups 

But in a familiar surroundings

Anyone who has gout knows the feeling

I don't have gout, but pseudo gout, calcium crystals in my arthritic joints

The pain needs to felt to be believed

Triggers immune response and the tablets which controls that response I am not allowed

They can inject drugs into the joint short term I believe 

And I have a number to get me to the hospital for that quickly 

But I'm not sure. 

If I ride out the pain and immobility

I'm left with stiffness and much less pain but for weeks

The stiffness leaves me unsure of my balance

And other arthritic joints are painful because Ive put strain on them trying to relieve the painful joint

I feel so much older than I am

I'm losing muscle strength from inability to exercise 

I can't believe the difference in two years

When I went repeatedly to the GP to try to explain that something was so wrong 

Before he finally referred me to a rhuematologist 

Who diagnosed the problem 

Sandra


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## patp (Apr 30, 2007)

Reflexology Sandra! And maybe massage? Reflexology is amazing for clearing crystal build up in joints. It is only focused on your feet so no need to worry about the therapist having to manipulate your joints. Makes a lovely mother's day present  (Not the sort offered at a beauty spa etc. Try to find a specialist).


Also your muscles will strengthen if you can get back to swimming (hydrotherapy).


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