May I vent?

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Mao Mao
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May I vent?

Postby Mao Mao » Sat Jul 20, 2013 10:12 am

It's regarding Paul (my partner, on here briefly as Lupus several years ago).

He has been ill for over 18mths now, and was diagnosed with Chronic Fatigue Syndrome and Chronic Paroxysmal Hemicrania.

His symptoms are, amongst many, extreme sensitivity to light and sound, impaired mobility (which is especially due to agonising pain around the trunk of his body, making bending next to impossible), trembling in limbs, shaking in limbs, 'electric shocks' through limbs, feeling extremely cold all the time (it's 30 degrees Celsius here, and he's wearing a hoodie), slurred speech, stammer, 'mumbles', mind fogs, loses balance and falls frequently (Gabs and I have picked him up off the floor several times), forgets things (including meds), cold sweats, terrible headaches, lack of appetite,and poor concentration, aside from the expected extreme fatigue.

I have to help him wash himself, make sure he eats, takes his meds, etc.

Gabi, despite being autistic herself, is counted as a carer for her father. Thankfully, she gets support with this through the young carers organisation.

He qualifies for the highest level of mobility care, and has been told by the chronic fatigue specialists that he has a particularly severe case of it. He is also under a neurologist for the CPH, a separate condition.

It started in October 2011 with infection after infection, and started to go steadily downhill from January 2012, with an escalation in symptoms and intensity from Easter 2013.

Now, the reason why I have provided a shopping list of his symptoms and some of the care he receives is to allow a little perspective.

Because...wait for it...

...his family believe that it is ALL IN THE MIND!!!!


Some memorable quotes from his mother:

'It's all in the mind'

'If you lived with me, you wouldn't need that walking stick, son'

'You've got to WANT to get better, son' (while he's trembling, shaking, in pain, stammering etc and sat in front of her)



I told the specialist this, and was told bluntly that it is NOT all in the mind. She went on to say that you never get 'couch potatoes' with this illness, it's usually the people who burn the candle at both ends. This fits with Paul, as he was working from 7am to 10pm prior to and during the beginning of his illness. Heck, we even converted our old brick shed into an office for him, so he could work from home! The pattern of infections is also typical of CFS.

Despite this, his Mum believes that he simply isn't trying hard enough to get better, has told Gabi that her Dad would benefit from going out swimming (travelling by car is extremely painful for him, as even the slightest bump in the road causes him to clutch his torso and call out in pain, plus the bending to get into swimming trunks, the pool, the lack of balance, extreme fatigue etc etc make this impossible) and has generally been unsympathetic. Paul has been left in tears after meeting her, and this is a 38yr old man who prided himself on being tough and smart.

Wow. Just fucking wow. How can a parent behave this way to their offspring?
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Re: May I vent?

Postby neko2 » Sat Jul 20, 2013 10:50 am

I'm sorry he has to go through this. Lay people are a pain when it comes to illnesses that can't be seen.

I doubt there is a way to make her understand unless you can get proof it came from her DNA, though she would probably still deny it. It may be best to limit time with her or get real good at changing the subjects.

My mother-in-law believes my stones are from not drinking enough water, they are idiopathic as I almost swim in what I drink. Also trying to explain how meds have a expiration date goes out the window. Sure take an antiviral that is 8+ yrs old (just one) when you feel like the flu is coming on. Fucking stupid. Just as examples as to how people think.

If I find a way to get people to understand I'll let you know. Until then I know he is hurting and I wish I could help take it all away.

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Re: May I vent?

Postby Mao Mao » Sat Jul 20, 2013 12:37 pm

Thanks, neko.

She is as ignorant as the excrement from a porcine creature, but like many ignorant people believes that she knows better than the professionals. Actually, she believes she knows better than anyone.

You summed her up very nicely. Unfortunately, I see her almost every weekend as Gabi stays over with her grandparents most weekends, although Gabi has lost a great deal of her enthusiasm as she has to hear what her Nan says to her Grandad behind our backs. The poor kid sticks up for her Dad, but gets overruled, despite witnessing more of what her Dad goes through than her grandparents, and therefore being in a better place to judge what has happened to him.

Of course, MIL always asks me how her son is getting on. I tell her truthfully (and try to keep things as sweet as pie), and she then develops selective hearing.

She wants to come to the next CFS clinic mob handed, as in herself, P's Dad and the two brothers still living in the UK. She has said to me that it's because you (as in P and I, presumably) don't hear everything the specialist has had to say.

P doesn't want all of the family to go. It'd be overkill. The clinic is small, although it is the regional centre and treats CFS patients for hundreds of miles around.

BTW, I mentioned our little problem to the specialist last time, who was sympathetic, but also described other patients who'd also had mothers who believed it was 'all in the head'. One mother apparently argued back in front of a whole room of other patients and families during a presentation on the subject!

Of course, the regional specialist for the North West of England knows nothing, nothing I tell you, compared to the mighty power of ignorance! (insert eyeroll here)
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Re: May I vent?

Postby Mao Mao » Sat Jul 20, 2013 12:44 pm

BTW, the clinical specialist has recommended that occupational health come out to the house to provide some aids to make life easier for him (and I have to be honest, me), and a nutritionist to help with his diet as he needs encouragement to eat. He has been advised to 'graze' on healthy snacks, which I am doing my best to provide, but the nutritionist may be able to provide supplementary drinks and snacks.
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Re: May I vent?

Postby Honeybun » Sun Jul 21, 2013 2:57 am

So sorry you're all going through this. Maybe she just doesn't want to admit to herself what's happening to her son, or she may just not understand. Even if she went to the specialist with you she may only hear what she wants to hear. Are you able to explain to Gabs that her grandmother doesn't understand his condition?
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Re: May I vent?

Postby allegro63 » Sun Jul 21, 2013 6:05 am

If P doesn't want the enclave of well meaning, but utterly unhelpful family members trying to undermine his care, then he doesn't have to have anyone, BUT the people he wants.

He needs to tell them. "Thanks Mom, but I am in good hands with my caregivers and my docs. This is a chronic, incurable condition, that may have periods of dormancy. They call them auto-immune disorders. Hopefully one day a cure if found. Until then, just try to understand."

Of course she won't hear it.
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Re: May I vent?

Postby Ireneb » Sun Jul 21, 2013 1:50 pm

The pain and disability are real. It is strange that some people cannot deal with this and immediately go into "It's in your head" mode. Plus, even if that were true (which I don't believe), the nerve cells are firing away like mad and creating pain and other symptoms and that needs to be dealt with.

I wonder what she is hoping to gain from this? A son who is well again? Or does it mean that if she accepts his illness she has to accept her own mortality?

It sounds as if she could do with some attention herself, from a counsellor or therapist.

I'm sorry you've got this to deal with on top of everything else, MaoMao. You've had some seriously rotten luck as a family. Vent away to your heart's content.

(((cyber hug)))
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Re: May I vent?

Postby badplantmommy » Sun Jul 21, 2013 3:12 pm

I'm sorry that Paul has been hit by this awful illness, and really sorry that you all have to deal with his mum's ignorance on top of everything else. :wah: (((Gentle hugs all around.)))

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Mao Mao
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Re: May I vent?

Postby Mao Mao » Tue Jul 23, 2013 3:56 am

Thanks, everyone. I just needed to vent. Sometimes, I remember that I'm only human and that things do get on top of me.

BTW, just come back from the GP with Paul, and she said that the CFS clinic a) wouldn't stand any nonsense from family members and b) they also wouldn't allow so many family members turning up at once.

So yay...we have the perfect excuse for them not turning up mob-handed. :smile:
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Re: May I vent?

Postby neko2 » Tue Jul 23, 2013 3:03 pm

That is great!!! Sounds like she was trying to out number them.

By they way, vent all you want. We'll say "yep, that sucks". :happy:


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