View Full Version : I am Groot
Jaquaia
08-04-18, 07:45 PM
(panda) can you take it easy for the rest of the evening?
I am, I’m not going anywhere except for the toilet
Oh hunni, I'm sorry you're having such a hard time right now... (bear)
Mo(panda)rning love.....dare I ask if you're feeling any better today? What you're experiencing sounds horrendous!!
Im feeling better than I did. A bit fuzzy headed and achy but I’ll live. Jess is not helping as she’s getting all het up over me ‘breathing too loud’ (rofl). I do love her, honest!
Today, I need to do some work but currently Si and Jess are home and the cleaner’s here. I need quiet to concentrate so I think I’ll wait til it all settles down
"Breathing too loud"? - Are you just huffing and puffing everywhere?
Jess hates background noise (we assume it’s due to the glue ear) and my breathing is never quiet enough for her - she doesn’t accept it’s because I have asthma
OldMike
09-04-18, 10:59 AM
Im feeling better than I did. A bit fuzzy headed and achy but I’ll live. Jess is not helping as she’s getting all het up over me ‘breathing too loud’ (rofl). I do love her, honest!
Today, I need to do some work but currently Si and Jess are home and the cleaner’s here. I need quiet to concentrate so I think I’ll wait til it all settles down
Mayhap Jess is jealous of your sexy heavy breathing (giggle) solution buy her some industrial ear protectors ;)
What used to annoy me was when someone had a whistling nose, what am I like (giggle)
I'll leave you a big hug Paula (bear)
Did you manage to get a bit of quiet?....sounds like Piccadilly Circus in your abode!(giggle)
Lol Flo!
I’m very cross! Due to ‘an admin backlog’ my neurology referral was only sent out last week!!!!! :@
OldMike
10-04-18, 12:12 PM
No, I’m livid
Paula do what it says on my breakfast mug "Keep Calm and Eat Custard"
I couldn't find a custard smiley --> (tea) (panda)
magie06
10-04-18, 01:01 PM
That's dreadful. I think I'd be raging too.
OMG That's horrific! Especially with the symptoms you are having to deal with and how potentially serious this is!
I hope you're complaining...
I’m going to hope that Southampton get on it now they have the referral - I’ll give them a week then chase.
I’m going to hope that Southampton get on it now they have the referral - I’ll give them a week then chase.
You could call them today and explain the situation - about the admin issue, the IIH symptoms and the CRPS and that you need to get notice for Si to go with you etc...
You know those days when everything you do screws up and has to be redone? Yeah, that ....
Oh bugger! I'm having a similar day.. must be something in the air.. Did you call about your neurology appointment?
OldMike
11-04-18, 02:44 PM
You know those days when everything you do screws up and has to be redone? Yeah, that ....
Oh no, I hate those days, hopefully it'll get it out of the way and you'll start having good days again.
Oh bugger! I'm having a similar day.. must be something in the air.. Did you call about your neurology appointment?
No, not yet.
I spent the afternoon with my best friend. It was lovely :)
Glad you had a lovely time. Call tomorrow?
Glad that you have had a good time
My neck is so sore tonight, I’m finding it hard to focus on anything
Please hun rest so its as comfy for you as possible xx
Today’s been very frustrating - trying to do some charity work and my laptop (actually Jess’s laptop that she stopped using because it ‘didn’t work properly) is misbehaving.
I've had a message from Paula - she's got to go into hospital tonight wrt her neurology issues. She will be seeing her consultant tomorrow. She is going to try to keep me/us updated....
Many thoughts, love and prayers lovely....
OldMike
12-04-18, 05:06 PM
Thanks for the update Suzi, my thoughts and prayers are with you Paula (bear) (panda)
I'm so sorry to hear about this, my thoughts and prayers are with Paula too.
S deleted
12-04-18, 07:12 PM
Not liking the sound of that :(
magie06
12-04-18, 09:04 PM
You are in my prayers Paula.
I'll pass on everyone's thoughts to her.
Thank you everyone! And, thanks Suzi for keeping me going.
I got a call yesterday afternoon to go into Southampton General that evening in prep for a lumbar puncture today. I was very lucky to get a room to myself (tho it was on the men’s ward - ewww you lot are gross). There was a patient yelling most of the night and the bed was like a board, so didn’t get much sleep.
I had the LP this morning (done by a very cute Greek doctor ;)). It was about as comfortable as sticking a needle in my spine, and being in a position that I haven’t managed since my CRPS happened, could be - and seemed to have gone on for ever. But, I kept a lid on all the pain and on the anxiety by breathing exercises and got through it. Si turned up halfway through, which helped.
Results are that I definitely have idiopathic intracranial hypertension (too much fluid on the brain). The dr drained some fluid which got it down to normal levels but that’s only a temporary thing as the csf fluid is constantly replenished. So treatment is medication (which may interact with my lithium so I’ll need weekly blood tests to begin with) and I have to lose 10% of my body weight.
So, I’m very sore but I’m home and we have a plan :)
S deleted
13-04-18, 07:12 PM
You are so brave. I gotta admit I was a bit concerned about you but glad you have answers and a way forward. Really glad to have you back and I’m sure you’re even more happy to be home.
i'm glad you've updated everyone but please bugger off and rest....
S deleted
13-04-18, 08:07 PM
Sorry on this occasion I agree with the boss lady.
magie06
13-04-18, 08:42 PM
I hope you have gone to bed! You need your rest.
i'm glad you've updated everyone but please bugger off and rest....
Ok, ok ;)
Paula glad you home and have a plan in place but please go rest before the kippers come out :P I have lots of really nice slippery fresh stock, sent with lots and lots of love and gentle hugs loves ya xx
Lol Angie, did I ever tell you I love kippers ;)
I slept like a log for over 10 hours last night. But I’ve woken up very sore, with a cracking headache and a horrible taste in my mouth. All very normal, I’m told.
S deleted
14-04-18, 10:52 AM
Normal? You? Lol
Haha Paula you must be unique I hate the things, ok will find something you dont love :P(Kiss)
Please keep resting hunnipie
REST! Please rest gorgeous lady.
OldMike
14-04-18, 12:49 PM
Thanks for the update Paula, glad it went well (as well as it could be for such a procedure).
Paula your task for the day (if you decide to accept it ;) ) is, wait for it, REST (nod)
Edit had to add this.
(tho it was on the men’s ward - ewww you lot are gross)
Oh no we aren't :P
Oh yes you are, as the toilets attested lol! So, today I feel like I’ve been run over - very sore - but my head is a bit better (LP headache is common and can be relieved by being laid flat on your back - which I spent most of yesterday doing. I’ve managed to sit upright for the last 2 hours but the headache is returning so back to acting like a cockroach it is)
I’ve got an Extraordinary board meeting Tuesday so I hope I’m well enough to go
Sorry you're feeling so rubbish - is this just temporary? For how long?
I hope you're well enough, but if you aren't could you manage to be there by skype or something?
Hope it passes soon for you hunni xxx
OldMike
15-04-18, 12:25 PM
(bear) (panda)
magie06
15-04-18, 01:14 PM
Thinking of you at the moment.
Sorry you're feeling so rubbish - is this just temporary? For how long?
I hope you're well enough, but if you aren't could you manage to be there by skype or something?
It’s temporary, it’s just the fact that the amount of fluid around my brain and spinal cord has been changed, and that he hit against a vertebrae at the first try. It’s normal, and will pass but no idea how long.
Thank you for the idea, I may get them to put me on speaker phone if I can’t make it - Skype would be beyond their capabilities ;)
Your poor vertebrae! Ouch!!
How has the resting gone today?
Speaker sounds good at least then you can know 1st hand what's going on and get your 2p worth in too!
Resting has gone well - it’s amazing how much you can actually rest when even sitting upright is like being on a canoe in the middle of the Atlantic ... however, this last hour I’m start8ng to feel better so hopefully I’m over the worst of it. Except I’m really hungry because I’ve got to lose weight :/
Glad your starting to feel a bit better hunni x
(bear)(bear)(bear) lovely....
I’ve still got a headache and a bit nauseous but am going to try to remain upright for most of the day, if I can. But i will be taking it very slowly, got no choice really
Please don't push it lovely. If you need to rest then rest....
OldMike
16-04-18, 11:35 AM
Though I'd lost Groot's thread, panic over found it.
If it is more comfortable lying down the Confucious he say lie down ;)
Sit up for a while then lie down a bit, just mix it up a little :)
Main thing is get well soon, if rest is what you need then rest (bear)
I answered a few emails and it took forever, by which time I needed a lie down. I’ve got a very important extraordinary board meeting tomorrow which is worrying me - if it was an ordinary meeting I wouldn’t consider going but ......
What happened to speakerphone?
It’s in the charity commission’s regs that we have to see and hear each other. Potentially we could use Skype but I’ve always found that difficult to manage. I’ve spoken to my friend, who’s offered to pick me up, and I’ll tell her by 8.30am if I’m up to it. If it’s just the headache, I can cope with that, it’s the dizziness that’s making it difficult
This rarely happens but Si has put his foot down and told me I’m not going tomorrow ....
Good am glad he knows you better than us so trust his judgement hunni x
S deleted
16-04-18, 09:09 PM
I think that’s absolutely the right call.
Si is completely right. You need to put your own health first. If it's that important then you can attend by speakerphone - it's a disability forum so they should understand disabilities can cause issues.....
Still feeling pretty rubbish. Every time I’m standing up I’m swaying - it feels like the floor is sliding away from me. I’m kind of glad Si put his foot down, it took the guilt out of making that decision for me
OldMike
17-04-18, 11:20 AM
Si's a wise cookie, so just have a day of rest and more rest (bear) (panda)
I'm sorry you're feeling rubbish, but I'm really glad you're listening to Si..
Am another that is glad you listened to Si hunni xx hope your resting
I had the lowdown from my friend on the board meeting this evening. It’s a good job I didn’t go, it was a very difficult meeting and I’d have probably been a heap in the corner.
I’ve got a blood test tomorrow, I still have the massive bruise from the last one (it looks like I’ve broken my wrist ...)
Oh hunni ouch!
Sound like a wise decision to mis the meeting x
This was it on Sunday, it’s even more spectacular today!
https://preview.ibb.co/jOTT6n/CE360092_952_F_487_A_828_B_B1687_AABF4_CA.jpg (https://ibb.co/izbsXS)
magie06
17-04-18, 08:54 PM
That looks very painful Paula. I hope you are resting it.
Glad you weren't there, but I really hope you've rested.....
Not counting my chickens as the mornings are generally better but I do feel a little better this morning :)
OldMike
18-04-18, 09:56 AM
That's good Paula, hope it stays that way :)
Good hunni try and rest and pace xx
Went for a blood test as the Acetazolamide (new meds) May interfere with my lithium levels. But I wasn’t giving up my blood - not even a drop. Rebooked for Tuesday :/
I came back from the drs and fell asleep within minutes. I am feeling better than I was though - not completely better but getting there. I’ve been able to sit up and answer a few emails but struggling now, so I’ll see you on the other side ;)
Bugger about the bloods love..
Hope you're resting now.
Yeah I’m doing precious little but. It feels like I’m drunk and hungover at the same time! But it’ll pass
That seems mean being hungover without the fun bit first!
Hi Paula......how's things? Are you enjoying the sunshine?
OldMike
20-04-18, 05:49 PM
(bear) (panda)
Erm things aren’t great, I’m really low. I know it’s because this weeks been tough and it’ll pass but it’s tough when I’m in it itms
S deleted
20-04-18, 07:11 PM
Makes total sense and it sucks.
Massive hugs gorgeous, anything we can do to help?
No. I’m also really exhausted the whole time. I’ve been dozing on the sofa since about 8pm but can go to bed soon as I can f8nally take my meds
Jaquaia
20-04-18, 11:09 PM
(panda)
Why not take your meds up to bed so you can take them there? You can set alarms etc?
How's you today lovely?
Not great - mentally. I have brain fog, my body is reluctant to move, I ache everywhere, Im Struggling to deal with the day. All of which are symptoms I have with depression.
OldMike
21-04-18, 11:56 AM
Aww love it's probably the traumatic week you've been through, hope it's just a blip (bear) (panda)
Jaquaia
21-04-18, 11:58 AM
I wish I could make it better for you (panda)
I'm not surprised you are finding things tough, but honestly gorgeous you can get through this, you've been through so much worse and came out fighting. Let us help you fight.
Thanks you all :)
I told Si I’m struggling and he said “you’re struggling? You’ve got no need to be struggling, you’ve got me!” (rofl) which, in Si speak, means he knows and he’s got me (inlove)
Bless him that did make me smile
Hope your resting up and doing what you need to do to look after you x
Si's awesome!! He's got you and we have too. Is he going to work next week?
You've got one in a million there Paula.....what a sweet hubby. One day at a time eh? Have a restful day.xx
OldMike
22-04-18, 10:15 AM
Yup Si is rather special, a real diamond geezer (you see I'm good with the vernacular, they can't touch you for it (giggle) )
Si's awesome!! He's got you and we have too. Is he going to work next week?
No plans, I’m safe at the moment
Jaquaia
22-04-18, 11:11 AM
(panda)
I’ve had a thought. My aborted bloods last week were because the new meds I’ve been put on for IIH can impact on lithium levels. It’s rare but it does happen. And, of course, if the lithium is affected, my mood is affected ....
magie06
22-04-18, 01:48 PM
I hope you have an easy week planned this week. Try to take things easy.
OldMike
22-04-18, 02:24 PM
https://image.ibb.co/jRmcrk/teddy.gif
Mr Bear says "Take it easy Paula"
That would make sense lovely.... When are you having those bloods done.
I hope you have an easy week planned this week. Try to take things easy.
Haha, I’ve got a board meeting tomorrow, though I may not go - Si’s not sure I’m up to it
That would make sense lovely.... When are you having those bloods done.
Tuesday. Let’s hope I have veins this time
Hope it goes ok Tuesday hunni please dont go if your not upto it tomorrow xx
Are you really in any fit state to be going tomorrow?
Drink loads of water before you have your bloods taken and keep your arms warm ;)
Nope, I was in no fit state but went anyway. I got asked about halfway through if I was ok to stay, I said yes but should have gone home really. So I’m doing nothing this afternoon. Si’s working from home today
Jaquaia
23-04-18, 02:28 PM
Good. You have adult supervision! (giggle)
Lol, we are talking about my husband here! ;). I slept most of the afternoon, surprisingly .....
Was it worth putting yourself through it?
I'm glad you've rested... What's on the agenda for the rest of the week?
Jaquaia
23-04-18, 09:57 PM
Correct answer is rest...
Just sayin...
I've seen Angies kipper order for the week....
Was it worth it? I don’t know tbh except it felt like a huge achievement - and was the first time I’d left the house (apart from nurse appointment) since my LP.
Tomorrow’s my blood test, hopefully they can actually get some this time. Wednesday. Is my ophthalmology check up
Good luck with your blood test Paula. They always find it difficult to get blood out of me...it's a pain, literally! I usually end up bruised. Have a good day love.xx
Good luck today lovely lady!
magie06
24-04-18, 11:09 AM
Good luck. I hope you give up some of your precious blood easily.
And am off work today so with lots of kippers available, seriously hunni please rest as much as you can
OldMike
24-04-18, 12:32 PM
Hope all goes well with the blood test some nurses seem to take it no problem and I'm like is it over well that was quick but others well best leave that unsaid.
And am off work today so with lots of kippers available, seriously hunni please rest as much as you can
Maybe she likes kippers ;) seriously (think I've seen that word before) please rest Paula (bear)
Had to use my mod pencil to merge these posts, silly me double posted ;)
No probs taking the blood but I do have a lump (I assume blood collecting) where the needle went in. I’m sure it’ll disappear but will keep an eye on it. I’m back in a week for more Bloods
I’m not great today, just feel like everything’s a huge effort, wading through treacle. And also came home to a text saying Jess missed a lesson today, and an email saying she’s late (16th April) getting an assignment in. Not what I need right now
Jaquaia
24-04-18, 01:22 PM
Can you rest and do something to distract you lovely lady? (panda)
Hunni can you rest and let Si deal with Jess?
magie06
24-04-18, 03:17 PM
Please rest for the rest of today. I know how tired you can get after been to an appointment.
OldMike
24-04-18, 03:32 PM
I designate Si as the person to sort out Jess while you rest Paula (bear)
Hunni can you rest and let Si deal with Jess?
No. Her behaviour and work ethic has been getting worse and worse. We need to do this together as a united front. Also she’s got Si wrapped around her little finger ....
Okies hunni but please rest before and after xx
Yay for the blood!!!
Sorry about Jess love. How are you going to deal with it?
I'm worried about you. Your mood seems to have been really low for a while and I'm concerned...
I don’t know how we’re going to deal with Jess, this keeps happening.
yeah, i know im low and Si kmows too - he worked from home yesterday and was home 2 hpurs before normal today. im actually hoping its my lithium
I can understand that...
Is Jess not enjoying her course?
I don’t know what’s up with Jess tbh, we have told her that, if she wants to leave and get a job, we’d support her but she didn’t like that option either.
magie06
24-04-18, 09:39 PM
Is she having personality clashes with some of her tutors? Could that be something? Or could she be bullied?
All things we’ve thought about but the problems with not getting work in is not about one subject. I have asked her if there’s problems with her friends, bullying etc but she’s adamant there’s nothing wrong there. I just don’t get it
magie06
24-04-18, 10:33 PM
Maybe she just feels overwhelmed. Is there a lot more work than she's used to?
Maybe she's struggling with the change in teaching styles/expectations/deadlines etc?
Maybe. Right now all she’s saying is she hates getting the bus ......
Opthamology appointment this morning
How has ophthalmology gone?
Hates getting the bus? Do you buy that as a reason?
Nope, not buying that at all, and she knows it.
Opthamology was a challenge. My visual field is great, so no effect on my sight, but my optic nerves are still swollen, despite the lumbar puncture.
I came home and promptly fell asleep
Jaquaia
25-04-18, 02:39 PM
You obviously need the rest lovely (panda)
So, Bloods have come back normal but I’ve looked again at the side effects of the drug I’m on for IIH and it can cause drowsiness and depression .....
OK so it could "just" be an adjustment type of thing? If it continues, what other options are there?
I dont know. I’ve left a Message with Neurology for the consultant to have a look at the facts and see what he says. I have slept about 4 hours total this afternoon - I do know I can’t carry on like this. Each day is getting more and more difficult
Jaquaia
25-04-18, 07:51 PM
(panda)
Just because it is as it is now, it doesn't mean it's always going to be like this or harder..... hang on in there Princess Sparkles. We're here to listen and to help.
I know. Talking to Si, we’ve agreed that I won’t take the tablets until I speak to the neurologist, and see what difference that makes, if any. That way, we can see if it’s the meds are causing problems.
In other news, Si and Katie got into a massive row last night - one of my ornaments got smashed and there’s a hole in Katie’s bedroom wall. Looking back at that it looks like they were punching each other or something - they weren’t but both were so upset they took it out on the house ....... Katie took it on herself to ‘talk’ to Jess about the issues with college and then told Si that the way this house was run was a ‘joke’. Si did not appreciate that .... he doesn’t lose his temper often so when he does it has an impact on everybody.
OldMike
26-04-18, 10:51 AM
I've looked back in your posts to see if I could find what meds you're on for IIH but to no avail. I'm thinking with the stress you went through with the lumbar puncture and starting with a new drug whether it is just an acclimatization process you're going through and unless you're getting severe adverse reactions you should persist with the meds until neurology get back to you. Just my thoughts if you've discussed it with Si then I respect and support your decision. (bear)
Not good if ornaments and and walls are being damaged due to arguments that isn't going to do anyone any good.
As Suzi says "hang on in there Princess Sparkles" (panda)
Jaquaia
26-04-18, 11:12 AM
Oh hunni. That's the last thing you need at the moment (panda)
Mike, it’s acetazolamide
Stopping the tablets lasted 3.5 hours, at which point I lost my balance and instinctively put my weight through my bad leg (ouch). Balance and special awareness went right out of the window so cold turkey is not a good move ....
Jaquaia
26-04-18, 02:47 PM
Ouch! I wish I had a solution for you (panda)
Had another email from Jess’s teacher - the essay which was over a week overdue was not good enough - getting only 13 mark’s out of 30. I was on the phone to Si earlier and he was saying we need to do this and that, and I had absolutely nothing I could say about it.
Everything feels so hard right now - I feel like I’ve been tightly wrapped up in cling film and can barely breathe. I feel like I’m failing. When Si was fighting with Katie last night he was shouting that he’s under so much stress to keep our family going, looking after me, making enough money to pay the bills etc etc
Jaquaia
26-04-18, 04:18 PM
Oh sweetheart. That must really hurt. Does he realise you heard that?
I don’t know. I feel so guilty
Jaquaia
26-04-18, 04:55 PM
I know. And I know it's no good telling you not to feel like that as it will make absolutely no difference. I do think you need to speak to Si about it so it doesn't fester. But I can also appreciate you may want to protect him from feeling guilty about it. (panda)
I agree, definitely talk to Si about what you heard and how you are feeling.
I've been trying to leave you be so you can work through it, but do you want me to pester you a bit more? Might it help?
Love you guys ;). At this point I have no idea what’ll help tbh
Is it out of character for Jess to fall behind with work and get low marks? Is there something worrying her that she isn't talking to you about? With regard to Si's outburst, or frustration and letting off steam - it's a shame you heard it, and it's a shame you're feeling bad about it, but I bet if you had a fiver for every time he, or any other man with a partner/family screamed about keeping the family together, trying to make enough money for bills etc. etc...you'd be a wealthy woman! When there's a problem or argument about kids or anything else they don't have much control over, it ends up with the above dramatic comments! Don't feel bad love, don't feel guilty, don't feel ungrateful and don't feel useless or powerless. Along with a lot of others here, you are the epitome of strength, and a lovely wife and mum. Si didn't mean it. Ian never means it, and most other husbands and partners don't either! So there.....:)
Hey, shall I try sending you motivational and cheerleading texts to see if it helps?
Want an example?
Go Paula, go Paula, you can do it, you are awesome, go Paula, go Paula!
Helping yet? I've got loads more....
OldMike
26-04-18, 09:47 PM
(panda) https://image.ibb.co/bPjnYc/cheerleader.gif https://image.ibb.co/bPjnYc/cheerleader.gif https://image.ibb.co/bPjnYc/cheerleader.gif (panda)
Hey, shall I try sending you motivational and cheerleading texts to see if it helps?
Want an example?
Go Paula, go Paula, you can do it, you are awesome, go Paula, go Paula!
Helping yet? I've got loads more....
Our fearless leader, people! (giggle)
Flo, jess is just like her dad. She’ll keep going on something until she gets bored and will then stop. We’ve had this before with her GCSEs but the volume of work involved in her A levels mean she cannot afford to do that
I’m just so tired of being ill, of hospitals, of my life revolving around medical issues. I want to have the energy I need to get through each day, to not be exhausted just by meeting a friend for coffee, to have a life
S deleted
26-04-18, 10:13 PM
I’m not gonna lie, the last couple of conversations we’ve had are a worry to me. It’s blatantly obvious that you’re really not in a good place and with everything you have going on that’s not really a surprise. I don’t have anywhere near the same level of health problems that you are having to cope with and I find it incredibly hard to juggle the appointments and manage my health. At times I genuinely don’t want to go on cos it’s too much for me which means I have so much more respect for you. Yes life is pants right now but as I said to you earlier it can’t be this crap forever. You’re a strong woman and too damned stubborn to lie down and accept it to keep you down.
You do have a life. You may be having a particularly bad time right now, but you can and will get through this.
Hey Paula you're so awesome
you're so awesome hey Paula!
Go Paula! Go Paula! Go Paula!
Have you spoken to Si yet about what you heard?
Yes Suzi, I have. It’s all good
I'm glad. Any news on Jess?
How are you feeling today? Are you keeping a mood diary? Eating? Drinking? etc?
magie06
27-04-18, 01:03 PM
Thinking of you and keeping you in my prayers.
We’ve decided to see what happens with Jess and the rewrite. We’re not backing away from confrontation but are hoping she’d have got a shock which will get her motivated.
There’s no point in keeping a mood diary as it’s just low with no let up. I’m eating and drinking and taking meds. That hasn’t helped though - I’ve been really good, sticking to healthy food for 2 weeks, and haven’t lost an oz.
OldMike
27-04-18, 03:54 PM
You're a very good mum Paula, you can point Jess in the right direction and help her all you can but if she decides to go her own way there is little else you can do, how old is Jess now 17 so she's nearly an adult and will have to stand on her own two feet soon.
FYI this came from Old Mike's extensive knowledge of parenting ;)
She’s 17 next week, Mike :)
Hope the rewrite goes well.
How much longer are you going to give it before you speak to your Dr/Psych about your mood?
Til I speak to the neurologist and they (hopefully) decide to put me on alternate meds that don’t do this to me
Any idea when that'll be?
Unfortunately, no. The admin emailed him all the details when I spoke to her the other day but he’s only in that hospital one day a week and she has no say over what he does.
Hope you see him soon hunni
No chance of a phone consultation or anything? What a major pita!
How are you feeling today gorgeous!
A phone call is what I’m waiting for - I do have an appt on 25 May but can’t wait til then .....
Mood hasn’t changed tbh
I agree that seems like a very long way away especially when you're struggling.
What are you doing this weekend? What does Si say about it all?
Si is his normal, positive ‘we’ll get through it’ self. I’ve not got any energy to do much
magie06
28-04-18, 03:10 PM
I wish I lived nearer so I could call for a coffee and a chat. If you aren't able to do anything, then rest. Your body and your mind need it.
I’ve been watching Amy today. I think it was so irresponsible for parents of a 16 yo, who was on ADs and had bulimia at age 13, to let her get involved in the music industry. She was so fragile and said herself that she didn’t want to be famous cos she couldn’t cope with it. She had an extraordinary talent but when does the ‘need’ for that talent being shared become more important than that child’s mental health?
I have no idea... Some of the things I hear parents say and see them do make me wonder so much....
Hope you're resting lovely.
Being in the music industry with those probs in a child that young is definitely the wrong call. Hope you have a restful day today love.x
She was recorded saying (before she was famous) that she could never be famous as she wouldn’t be able to cope with it, but that she was never going to be famous - Jazz singers didn’t get in the public eye ......
It is just such a sad story and such a waste..
Ok, I’m fed up with this. I’m go8ng to call the GP tomorrow - I can’t keep waiting for the neurologist, I need help now
Jaquaia
29-04-18, 05:19 PM
I wish I could do something to help (panda)
OldMike
29-04-18, 05:47 PM
Hope your GP can do something to make you feel better Paula (bear) (panda)
I'm so glad you're going to call to get help. I hate that you need it, but I'm glad you're going to get help.
I wish I could do something to help (panda)
You do, you all do ....
magie06
29-04-18, 08:40 PM
I hope you get an early appointment. Thinking of you.
If you don't get anywhere with your Dr tomorrow, let us have a go! :)
How are things with you and Si and Jess?
Spoke to the dr. She was awesome - especially once I started crying ....... we talked through everything (got the usual, ‘you’re on much higher doses than we’d normally prescribe’) and she didn’t want to muck with my psych meds. I’m seeeing the neurologist on 25 May so we agreed I’d half the dose of the acetazolomide and hope that helped until I have the appointment. If I’m still rough Friday, I’m to call her back
So glad she was awesome. (bear) At least you have a bit of a plan...
OldMike
01-05-18, 09:36 AM
Glad Ms Doc didn't mess with your psych meds and hopefully the aceta-wotsit half dose will do the job with less side effects.
How are you today gorgeous?
Trying to keep busy but watching the clock as it feels like time has slowed to a crawl. Had some beautiful flowers turn up from a lovely, lovely friend (thank you Jaq!)
I’ve had another blood test (it’s weekly at the moment) and getting my hair done later though I’m so tempted to let the grey do its thing!
Jaquaia
01-05-18, 01:31 PM
If they made you smile, then they achieved what I wanted :)
Glad you had a reason to smile - nice one Jaq.
How's the hair? Did you let the grey take over?
How was the rest of the day? How are you feeling? How's your mood?
The hairs back to manageable (I had to cancel my appt cos of the LP and my hair grows really fast) and I caved and had it coloured. I just can’t be grey yet ;)
My mood is all over the place, really low then hyper, irritable (I shouted at Si for singing) and tearful. I hate it, it’s exhausting
Sounds it. Any idea of how long it'll take for the lower dose to take effect?
Maybe it is. maybe that’s why my mood has been all over the place. If so, I just hope this is part of the process leading to me feeling better ...
I almost forgot to tell you all. Working on the principle that I actively encourage honesty wrt mental health, and try to challenge stigma where I can, yesterday I wrote a group email to all the trustees I work with at the charity telling them that a meds change has impacted my MH and I will do what I can, though I may have to step back at times. I’ve had a few replies, and one positive message in particular that I never would have expected :)
I'm so proud of you! Well done!!!
Jaquaia
01-05-18, 09:09 PM
You are epically awesome!!!!
OldMike
01-05-18, 09:36 PM
Well done Princess Sparkles of Awesomeness (bear) (panda)
(blush) I knew you guys would get it. Si just looked at me as if to say, so what(rofl)
Jaquaia
01-05-18, 10:48 PM
That's because Si is a mere mortal (giggle)
That's because Si is a mere mortal (giggle)
(rofl)(rofl)(rofl) That made me lol!
How are things today Princess Sparkles?
Ok. So far I’m calmer than yesterday. I’ve got a quiet day today which sounds good to me
OldMike
02-05-18, 10:46 AM
That's good, just take it easy Paula (bear)
Ooooo I’ve had a brand new book delivered, by an awesome fantasy author. Normally I read books on my kindle but I wanted to preorder this and could only do that by hardback. I’d forgotten how exciting it is to receive a brand new hardback to delve into :) (The Outcast by Taran Matharu - perfect name for his style of writing lol)
I love a new book!
Hope that today has been kind to you x
Today I have done little except watch tv and read my book..... I’m turning into such a recluse ;)
What's the name of the book? I want someone to recommend a book for me. I really must read more! I used to be an avid reader. Nothing wrong with reading and watching tv lovexx
Jaquaia
02-05-18, 08:31 PM
What type of things do you like reading?
I love reading but dont have the inclination right now hope your enjoying your book hunni xx
I love reading but dont have the inclination right now hope your enjoying your book hunni xx
I haven’t for a while either. I read very quickly though, one fortnight holiday I got through 16 books!
What type of things do you like reading?
All sorts. Fantasy, Sci Fi, thrillers, crime/detective, some horror, chick lit,YA, Jane Austen, The Brontes etc etc
What's the name of the book? I want someone to recommend a book for me. I really must read more! I used to be an avid reader. Nothing wrong with reading and watching tv lovexx
The Outcast by Taran Matharu - I really love his books http://authortaranmatharu.com/bio/
Jaquaia
02-05-18, 10:33 PM
I really enjoyed the Chronicles of Ixia by Maria V. Snyder. I have the last one to read when I've finished my Douglas Adams.
Ok, I’ll put that on my list :)
Jaquaia
02-05-18, 10:48 PM
Just to warn you, it's 9 books ;)
Morning Paula! How are you feeling?
Just to warn you, it's 9 books ;)
Lol, no worries, that’s a weekends entertainment (giggle)
Morning Paula! How are you feeling?
I’m still doing the up one minute, distraught the next. Still it’s better than always low ........ the change in dose has changed things so it’s surely the meds.
It’s Jess’s 17th birthday today and presents have mainly been money for driving lessons ;) though we also got her some part suede, white converse.
In other news, forgetting the 10% weight I have to lose from the day of the lumbar puncture, I actually got it into my head this morning that, since the beginning of the year, I’ve already lost 13 lbs. so that’s not bad going without trying, for most of it
Hope things start to settle for you hunni now you have changed the meds dosage, happy birthday to Jess
OldMike
03-05-18, 11:17 AM
...
It’s Jess’s 17th birthday today and presents have mainly been money for driving lessons ;) though we also got her some part suede, white converse.
...
Happy birthday Jess though I haven't a clue what "part suede, white converse" is I can only hope it fits if it some sort of apparel. Light bulb moment it could be a pair of white suede shoes :)
There you go Mike
http://www.converse.com/uk/en/regular/one-star-peached-wash/159711C.html
Happy birthday Jess!
Hope you're having a restful and pleasant day lovely.
I’m ok, ta and we’re going out for jess’s Birthday tonight so I have to be. But she’s cheerful today which always helps ;).
Sooooo last night was interesting. We went out for dinner - us four plus K’s boyfriend - and it was good. I felt better than I had in a while and there was lots of laughter.
All day long I’d been struggling to get the right words and sentences out (aphasia type symptoms due to IIH). About 10.30 though, I completely spaced out - sort of like those split seconds before you faint but it went on for what felt like ages. I couldn’t answer anyone and it felt like I was on a different planet. I do remember it all, I just couldn’t respond. I went straight to bed and was fine this morning. Apparently it is a common symptom of IIH (ie I didn’t have a stroke before you all panic lol) but I’ve not had anything that severe to date.
Jaquaia
04-05-18, 02:39 PM
How are you feeling today?
S deleted
04-05-18, 02:54 PM
That sounds scary. You ok now?
OldMike
04-05-18, 04:42 PM
That sounds really scary, please take it very easy Paula (bear) (panda)
Hunni when do you next see your specialist or a doctor?
I’m ok today, actually I’m better than I have been for a while. Not completely back to my normal, but getting there. But I’d prefer not to have a repeat of last night so I’ve got to get my meds sorted.
Angie, 23rd May
You seem to be coping with a lot of bad stuff Paula. Glad you're feeling better today though. It'll be good to see your specialist/doctor. Are you going to write all this stuff down..dates and times....take it easy love.
Just wondering if you can bring it forward hunni x
Not a hope in hell, unfortunately. The consultant is only in my home hospital once a week, admin is all over the place and I’m still waiting for the dr to get back to me after I left a message saying I was struggling two weeks ago ... It’s not just me, the neurology department in our area is seriously overworked. If I can’t cope, I’m better off speaking to my gp again. I’ll manage though, I always do
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