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A bit out of everything at the moment, but...

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A bit out of everything at the moment, but...

Post by Brigitte0 on Fri May 30, 2014 4:24 pm

First topic message reminder :

Hi to All

This is (a whine later) and a Thank You to everyone on here for the support and inspiration shown to all who post. Sometimes it really brings tears to my eyes that there are a load of you who care about people you've never met. (Unless you do all meet up at the Ritz or whatever!)

This has been a truly awful week for me and though I haven't really summoned up much effort to post, it is so encouraging to read the threads and see the care and support that goes on here every day. I have really not come to terms this brain fog hassle. Most of the time I can't remember what was said in the first post of a new thread, let alone what is said further on down. Is this familiar, or am I going bananas?! I go to post a reply on a thread and can't remember what I want to say! I'm also getting my words confused quite regularly and numbers the wrong way round, even though I'm looking at a phone number for instance. My daughters are being very patient with me as they check everything themselves. Aaaargh. I can feel myself being down and depressed and I don't want to be but I can't lift myself out: it's like being trapped. I was looking forward to seeing my chiropractor this week and because my plantar fasciitis has been really bad, it had put the whole right side of my body out from my neck down through ribs, pelvis, hip knees to my foot with bad muscles etc along the way. I felt quite good when I left him but it never lasts. And then all the other bone/muscle aches everywhere else and it's not long before I'm walking awkwardly again and I might just as well not have gone in the first place! Well I could go on, but I'm trying to get myself out of this. I know I'm a worrier and anxiety is part of who I am, but the complete and utter brain fog thing has had me worried and I don't need to worry any more about myself! I had ME about 23 years ago and that was awful enough, but this whole pHPT thing seems worse. Am I going mad or is this a normal part of this dratted disease?

And thanks again for being there.

Love

Brigitte xx

PS Sorry for the whining and moaning!
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Re: A bit out of everything at the moment, but...

Post by Brigitte0 on Sun Jun 01, 2014 10:18 am

Thank you Audrey, Amanda, Kate and Jasmine. I'm nothing special and am in fact a very anxious wimp! Anxiety seems to go hand in hand with TS when you talk to other people on forums etc but never acknowledged by doctors. I can drive other people round the bend with it if they don't know me. 

It has been quite therapeutic to write it all down: I don't generally tell anyone and people wouldn't understand anyway! You really are a collection of healers in your own rights. I feel like I can face the world for another week or two at least. I really wish I could meet you all and thank you in person! 

Love and hugs 
Brigitte xx


Last edited by Brigitte0 on Sun Jun 01, 2014 11:05 am; edited 1 time in total (Reason for editing : Forgot someone!)
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Re: A bit out of everything at the moment, but...

Post by Hadleigh on Sun Jun 01, 2014 10:21 am

Brigette I agree with all that has been said in the above posts, I cannot find any wise words to add, just know that we are all here to chat anytime you like.

Take care

Nelly xx
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Re: A bit out of everything at the moment, but...

Post by Hadleigh on Sun Jun 01, 2014 11:40 am

Brigette I have sent you a PM about the horse, let me know if it doesn't arrive in your message box.

Nelly
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Re: A bit out of everything at the moment, but...

Post by Tigerlily on Sun Jun 01, 2014 2:15 pm

Brigitte - thank you so much for sharing your story - got to dash out but will reply at length later on.

Love from Tigerlily xx

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Re: A bit out of everything at the moment, but...

Post by Tigerlily on Sun Jun 01, 2014 2:18 pm

Kate - just a quick reply to you before going out - but I have the same inner elbow nodules and outer elbow pain and that same arm aches almost constantly now. A particular feature is that if I knock that elbow for any reason I could just hit the roof with the pain!

Is that the same for you? I can believe all the other similarities - back soon on those.

Love Tigerlily xx

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Re: A bit out of everything at the moment, but...

Post by Brigitte0 on Sun Jun 01, 2014 3:17 pm

Nelly, thank you for the PM: I have sent you an email. I think I forgot to sign my name so sorry about that! I always forget something.

Love
Brigitte xx
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Re: A bit out of everything at the moment, but...

Post by Hadleigh on Sun Jun 01, 2014 4:05 pm

No you didn't forget Brigitte, I would have known it was you anyway so no probs even if you had forgotten Wink 

Nelly


Last edited by Hadleigh on Sun Jun 01, 2014 5:23 pm; edited 1 time in total
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Re: A bit out of everything at the moment, but...

Post by Guest on Sun Jun 01, 2014 4:13 pm

Hi Brigette,
 
I really sympathise with you and when you have bad days, the days were every part of your body hurts and you have to drag your body around to accomplish the most simplest task and more than often you crawl into bed physically and mentally exhausted, hoping that tomorrow will be a better day, such is the nature of this horrible parathyroid disease. 

Life can be hard enough sometimes and added life events make it extra tough!  I have only been on this forum for a few weeks and already i have learnt so much already, so Brigette i hope your bad days are few and  good ones many!


Take care


Diana 

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Re: A bit out of everything at the moment, but...

Post by Tigerlily on Tue Jun 03, 2014 3:35 pm

Hi Brigitte

Sorry it’s taken me so long to reply to your long mail, but here I am, and what an absolute odyssey you have been on with your health all your life. I’m grateful for you telling me about your rare disease, and I know just what you mean about just having to splatter down one’s thoughts before they evaporate – another symptom of hyperparathyroidism!

It must have been very frightening for you when you were young to have such a difficult disease with clearly visual symptoms, and, yes, girls particularly can be very cruel if someone is or looks different in any way. It sometimes seems like a sort of survival mechanism with them. If they can hurt you and scramble all over you to get to the top of the heap they think they will survive better themselves. It usually comes down to fear in the end, fear of what is different.

From what I’ve read of TSC complex since reading your mail (and it has been quite an education reading about it!) it sounds an extremely difficult complex to live with and I admire you enormously for being able to live with it and bring up a family at the same time. You were obviously not going to let it stop you doing that, whereas I would probably have dissolved into an unmoving heap on the floor quite early on! You say you feel like an anxious wimp sometimes: you have every right to feel anxious, Brigitte, but it doesn’t sound as though it is a condition for wimps, so I’m completely sure that you’re not one!

It’s good to know that your medication has worked so well all these years, and what an interesting link you have uncovered with Vitamin D deficiency – that is just amazing! There is a lot of research coming to light at the moment about Vitamin D’s effects on many conditions and body systems, and I’ve been especially interested myself in its supposed cancer-prevention properties (especially breast and prostate cancers) as I’ve already had a malignant melanoma (just a tiny freckle, hardly visible) and my Vitamin D might have been low for some years.  

What a coincidence about you also falling off a trampoline at 14 and having had to have a “tame” chiropractor at your side for so many years. I practically moved in with mine, I was seeing her so often before I had the back operation! Interesting that yours said he thought you never had carpal tunnel problems and that the problem was further up your arm, and possibly your spine. Oh, and your comment about them surely noticing a bone problem from recent X-rays? Possibly not. Whoever reads the X-rays should notice these things, but I fear they are often only looking for what they have been told to look out for, so I don’t think one can assume that they would notice.

I do hope you don’t have a bone problem connected with pHPT, but at least you’ve got a friendly endo that will listen if you put that point to them. When we have our “take your endo to work” day suggested by lozza (and I’m still laughing at that one!) I’m sure every one of us on the forum will be all over yours like the proverbial rash!!

Yes, I’m also hanging onto the HPT diagnosis hoping that it will cure all my ills. At 62, I’m hoping for a few symptom-free twilight years (cue violins etc) !!  No, you’re not over-thinking, Brigitte, we seem to have to do a lot of the joined-up-thinking ourselves as patients – all down to the “division of labour” within the NHS which leaves very few people in charge of taking an overview or project-managing the cases of individual patients.

Oh, just on the topic of sleep: I don’t like the thought of being zonked out by drugs to get to sleep so I asked my GP to prescribe for me some melatonin, which the body will make itself given a prevailing wind (!) and enough darkness at night. I think people take it to get over jet lag, but it can’t be bought over the counter in the UK (we’ll have to get Audrey set up as a supply post for it from the US!!).

I’ve had some success with it. It stops me waking at 2-4am if I take it at about 11pm just before getting into bed. Just a suggestion. Also “Quiet Life” herbal tablets before bed from Holland & Barrett used to do it for me, but not lately.

I’m not surprised you just hate your condition, by the way, Brigitte, but you must have a really good heart to allow every Dr/student etc to study you as it’s such a rare complex. Your elderly GP must have been allowed the same privilege by someone like you at some point for him to be able to diagnose you. There’s a nice circularity of  generosity there!

In connection with you hating your condition, I have a strange story to tell you. I have a book of Clinical Medicine that has been my bible ever since my father was confounding his doctors who were unable to diagnose him. So I looked up Tuberous Sclerosis in the index at the back and the only similar thing was something described as “Tuberose” Sclerosis. A glaring typo! Because when I went to the appropriate page it was spelled correctly. So I had a think about this and, as someone who loves essential oils and making their own perfume, I had an inkling that Tuberose was something very precious, and here is what I found:

Relaxing, balancing and strengthening. The intoxicating fragrance of Tuberose is sweet, floral and honey-like, with spicy and narcotic undertones. Use it to bring about a transformation of character, to dispel negative attitudes and instil a positive resolve.

The absolute extracted from this flower is considered by some experts to be the most expensive natural flower oil at the disposal of the perfumer, and literally worth its weight in gold.


Very interesting!

So, all in all, treasure your endo, Brigitte, and hang on in there. After all you’ve been through so far, a little thing like HPT isn’t going to phase you, I’m sure. Keep us posted on progress and thanks so much for being brave enough to share your whole story with us.

Love and GBH (great big hugs!) from Tigerlily xx

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Re: A bit out of everything at the moment, but...

Post by lozza on Tue Jun 03, 2014 4:59 pm

Hi Brigitte.

I needed some time to read your story, you are inspirational - medical people get excited about seeing someone different and then think about how the patient will feel about having loads of students in room.( I guess the job is just run of the mill most of the time like other jobs! )

I think the PTH is just difficult, I am up and down like a yoyo. on bad days I just want a "duvet day" I have little energy and trying to plan to go anywhere and do anything is impossible.

So don't feel alone in this, we all understand and are going through the same thing.

on bad days, I try and listen to some relaxing music, read a book etc- than I don't feel so bad about not be as active as most people.

You have a good endo, this is really positive. I also think after hospital appointment I just need a bit of space as it is a lot to take in. I haven't meet anyone with PTH in person, it is just a strange disease.

Thank you for sharing your story of TSC, I haven't heard of this and I send loads of hugs.

Out of interest you mention " brain fog" ia m just wondering if you have had your Vit b12 check ?  it might be worth talking to GP/Endo when next see ,as this can cause brain fog/ extreme tiredness. I have this condition as well and need b12 injections every 12 weeks for life.

I do agree out of all the illnesses I have I find PTH the hardest to managed, I thank everyone on this forum for helping all of us. Perhaps we should start a thread on how people managed all of this. With lots of inspiration pictures, poems, tips etc.

sorry for bad spelling, having a bad "dyslexic day " but did want to post.

best wishes

Lozza Very Happy

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Re: A bit out of everything at the moment, but...

Post by Brigitte0 on Tue Jun 03, 2014 9:34 pm

Thank you Tigerlily and Lozza

As far as sleep goes Tigerlily, disturbed sleep is a problem with TSC and a year or two ago, my Neuro decided I was sleep deprived. I hardly slept at all when I had the "carpal tunnel", but really I have rarely slept through the night all my life, even as a child. The Neuro prescribed Amitriptyline to help me sleep, help relax me so I wouldn't wake with a migraine every day and also assist with relaxing the back of a neck where it really hurts and can cause headaches. I was quite desperately ready to try anything at that point and the Amitriptyline did actually help a lot. They're on my repeat prescription so I do still use them when I can't "man up" and need to sleep which at the moment is quite a lot (though they don't always work). I can't spend every day in a darkened room with a migraine: it's just too much to bear! Believe me, I have tried every remedy under the sun for both migraines and sleep problems over many years. I have an MRI scan every few years to see what's happening in my head. The last one they took got "lost" and they found it nine months later! Good old NHS, keep the patient's notes up to date. My GP was really cross because he'd been trying to get the results for so long. I'm due another one later this year: something that you basically have to sort for yourself and arrange to get re-referred. <sigh>

Tigerlily's Bible sounds like something to treasure though I've never heard of Tuberose! Perhaps I should try it though I'm not very good with perfumes, (my nose has a sinusitis problem). I'm a strong believer in herbal tea though. I mean Mrs Rabbit wasn't wrong when she gave Peter Rabbit chamomile tea after he'd eaten too much in Mr MacGregor's garden!

Lozza, duvet days sound good! Fortunately for me, I don't have to work and haven't since the carpal tunnel days because working with horses requires strength in both hands. These days I can spend a long time getting up and acquainted with the day before I face it. I've never had a vit b12 check, so perhaps I should enquire about that, thank you.

At the moment I've been feeling nauseous which is something I haven't had before with HPT. I suppose it's one way to lose weight though not very pleasant. HPT is trying to take over my life  Rolling Eyes 

I was a bit worried about the GBH, Tigerlily ,until I saw you weren't actually offering grievous bodily harm  Smile  GBH back to you  cheers   

Love and hugs
Brigitte xx
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Re: A bit out of everything at the moment, but...

Post by Meggy on Wed Jun 04, 2014 10:07 pm

Hello Brigitte, haven't been on here for a while so missed your post and just wanted to say that I'm so sorry you're having such a bad time. Sending a virtual hug x

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Re: A bit out of everything at the moment, but...

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