Mr and Mrs P

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Mr and Mrs P

Postby philhj » Tue Nov 21, 2017 9:25 pm

Hi folks

I look after Mrs P who has had an FM diagnosis for 10 years. She has always had tight/locked muscles, muscle spasms, neck pain and migraines. Around 15 years ago she experienced increasing levels of muscle problems and fatigue. In 2005 she was diagnosed with raised calcium and scans showed hyperparathyroid. It took a year for them to take out the overgrown glands, but then she didnt recover as expected and after a year of the tests cycle she was left with an FM diagnosis. The locked muscles developed first above and below the pelvis especially quads, and over the years gradually migrated to cover more and more muscle groups and walking became more and more difficult. In 2012 my London job came to an end so we decided to switch our second floor flat in the smoke for a countryside bungalow and garden. In our new house it became clear that walking was getting rapidly worse, it took a year to realise that actually she had hip arthritis (probably accelerated by the HPT which strips calcium from the bones), and then a 12 month process to replace both hips. That at any rate was a great success, big ups for the hip surgeons, amazing job. But the muscle problems are still there, and make recovery a very slow and limited process.

We have tried all the FM meds, which have their pros and cons, and settled on Pregabalin, Duloxetine, SR Morphine, Vitamin D. Lack of Vit D has quite clear impact on Mrs P's muscle spasms, and manifests as restless leg syndrome. For a long time Mrs P didnt think life was worth living and was seriously talking about not carrying on, but having a garden rather than stairs, not having to deal with a city, and learning to accept that there are million things she just cant do, has eventually brought back some balance and a degree of contentment. I came to this site because I was doing PIP benefit forms and had a question. Doing that application is itself a tough experience. You have to think about all the problems you have instead of turning your back on them. On the other hand the end result is helpful, we found it made us talk to each other about symptoms and their impact in a way that we usually avoided. That brought another layer of understanding and acceptance. The arbitrary decisions of the benefit system are another matter though...... ah well. Nowadays Mrs P potters around the garden within 10/15 metres of the house where her beloved flowerbeds are. She never goes out as its too painful, never talks to anyone other than family and if she walks more than 20 metres then she is going to tell me about it for several days afterwards. She feels that if she can make 100 square yards of the earth into a place of beauty then even if she has to do it on hands and knees and moan at her muscles aching for the rest of day then life is work living :-D So she potters for an hour or two in the morning and then goes back to bed for the rest of the day. Fortunately she has always liked her own company and loves to read, and lives when the kindle means you can make any book have readable size text even if your eyesight is falling apart. Also fortunately the kids are all grown up so we are able to just make the best of it without having little uns to look after at the same time - big love to all of you who have to cope with FM and kids or FM and jobs.

When Mrs P was first diagnosed with HPD and then FM she was hugely relieved in the sense that she had been feeling like she was being a total wuss for feeling ill. As she was a sculptor she took some of that experience and put it into work she was doing at the time. If you like art expressing experience you might find this interesting... http://www.susans-house.com/I-&-F.html

Her show statement said this:

"I dont know what I am getting wrong here, but it must be something fundamental. It's been five years since I've managed to live as I should.
I'm not doing a real day's work anymore, it seems to be too much effort to keep going, my house is dirty and I'm not contributing to the community in the way I used to. It's probably because I am so unfit - I should exercise but I'm too lazy.
This is not really acceptable, but however hard I try, I don't improve.
It's wrong to be so lacking in enthusiasm for life. I seem to have lost the ability to enjoy anything, and I wake each morning looking forward with dread to another day's failure.
I must be horrible to be around, so it's better for other people if I avoid them as much as possible. I hate to think what damage my negativity and laziness are doing to my kids.... I wonder if it's even possible for them to recover one day?
I must be fatally flawed as a person. All I can do now is come to terms with the knowledge that I have nothing of value to give.

Visiting the doctor for another reason, I am surprised to be told that I am physically ill. Ill, not wicked.
The relief is incredible."


No kids were harmed in the making of this history. They of course are not as obsessed with our shortcomings as we think they will be... 8-) .... and carry on with their own lives regardless.
philhj
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Re: Mr and Mrs P

Postby LindyM66 » Fri Nov 24, 2017 10:04 pm

Hi Mr & Mrs P

I can relate to the relief felt, when diagnosed. You know you're not mad, that it's not all in your head, that it's not just due to your age, or weight, or this or that! GPs who show little interest and flippantly tell you to self refer to physio - but there's a 12 week wait before you even get an appointment. Running the gaunlet of tests, being passed from pillar to post, whilst attempting to continue with your life.
It can be so very isolating, and some people can lack empathy and understanding. Friends fall away. Stop visiting and inviting you to things - making you feel more isolated.
FM is a life changer, and I remember thinking to myself, " is this how I'm going to be for the rest of my life?". I'm fortunate that for now, the medication seems to be doing it's job, and more or less keeps me on an even keel. To imagine your life in continuous pain, is so very overwhelming. I "get you" Mrs P.
I can't do lots of things I used to, but I can still do some of the things - so I focus on what I can do. I guess we all have to do that.
Mrs Ps artwork is very expressive. I could almost "feel" the emotions. Thank you for sharing it.

Take care of each other.
Much Love
Lindy x
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Re: Mr and Mrs P

Postby philhj » Fri Nov 24, 2017 10:36 pm

LindyM66 wrote:Mrs Ps artwork is very expressive. I could almost "feel" the emotions.


Yup she regarded her job as a sculptor to get people / society to think about the reality of things that they usually hide away.

She was pretty good at that. My dad (picture ramrod straight backed public school educated stiff upper lipped military manner) came to first show, and quite literally went red with rage after rapidly going round it. It evoked such strong emotions in him that he considered should not be there, that he didnt know what to do with himself. Hehe almost as good as when I took him to see the film American Beauty near my 40th birthday. I wanted to see if he could discuss the impacts of parenting without openness and without acknowledging children's experience. No chance! But that generation grew up in the blitz, in London, and then saw service in WW2. Its inevitable they were going to find it hard to engage with the children of flower power and massive economic growth.

Thanks for looking, and yes I am the looker aftery kind. Taking care of people is one of the few things in life that give me true satisfaction. And if Mrs P was here she would say that she looks after me cos she figures she is onto a good thing :oops:
philhj
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