Just a little advice please with 2 problems I have.
My Wife.
I am 100% sure she would benefit from being a part of this community here as we have been talking over the past few days and had a long family meeting last week of which I posted a thread on: have a look here healthunlocked.com/headway/......
Its difficult for my wife and kids but we had fantastic day yesterday and all went well I'm just unsure how to approach her, no that not true I have suggested she should come on here but I'm not sure how to follow it up and get here on here. Getting here to read a few threads and have a browse may be a good idea. Have any of you got a partner or husband that is on here who's the non Bi member and its helping you and them?
My parents.
I had a chat with my mum yesterday and she wasn't very happy that I was not going to visit them as I felt brain fatigued and just wanted to stay home with my family. I explained that I wasn't feeling great and just wanted to relax and have a quiet day. She did not understand this and because of our chat a few weeks ago thinks I'm cured of all Bi stuff, I wish I was but I did explain to both my mum and dad about different versions and the progress being made will take time, I'm sure my dad understands but my mum doesn't. I have the 2 booklets from Headway managing fatigue and coping with communication problems. I have been through these 2 booklets and have highlighted and identified and notated stuff that related to me and will take these to my parents this morning to have a read through. Its difficult because I have to educate them on this stuff and I'm sure they don't really understand what its about but I have to give it a go. Would you advise me doing this and maybe for them to attend a headway meeting?
Have a fantastic Boxing day, God Bless. Nick XX
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MXman
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22 Replies
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Hi Nick
I am a non BI survivor who uses this site as my husband suffered a sub arachnoid haemorrhage 3 1/2 years ago. He is also on the site but as we have a great relationship it isn't a problem seeing what eachother posts.
I found a lot of support initially and ongoing it helps for me to see what other survivors are experiencing, I feel now I can offer some suggestions which may be useful too.
While I can see why you feel your wife may find this site useful, she also may not feel comfortable putting posts on that you can see, or may just not be happy expressing her feelings online.
May I suggest that she may find that speaking to other spouses, or unpaid family Carers as they are also known. There are specialist organisations for these Carers who can se things totally from the Carers, or spouses perspective. Some organisations run groups just for these Carers and also help with Carers rights and helping them get to grips with what they are dealing with emotionally and practically. Try searching online for Carers Trust where you can search for your local organisation. Or look for "support for Carers" in your area online.
As a wife it is so difficult to deal with everything that is thrown at you during this time. I see my self as a very resilient, practical person, but I struggled with the everything being thrown at me, nearly loosing him, then being told he'd never talk, walk, etc, then that changing to him seeming normal to anyone for an hour or so. We have made significant adjustments in our lives to ensure that he can be as independent as he was before, but with all the restrictions due to the difficulties he continues to have, including major fatigue.
As for parents, well totally different matter! Husbands mum continues to believe he is fine, I have to keep being fairly blunt about things like he can't visit on his own because the drive is too far. As for my mum, she swings from treating him as if he is totally incapable of doing, or thinking , anything to expecting him to be as he was before. She has no understanding of how it has changed my life and our life together but we have decided that that's her problem.
I regularly explain, again, to family about husbands fatigue problems but this Christmas we have managed, so far, three nights in a hotel, with Christmas Eve and Christmas Day at daughters nearby. On both days we came back to the hotel for a coup,e of hours in the afternoon for a siesta, so husband could rest, and left their house by 7pm each evening. This way he has enjoyed the holiday, everyone has seen him and he is still well enough for us to move to another hotel tonight for an early meal out and evening just for us. Tomorrow we see his mum for the afternoon, then another quiet evening in a hotel and the following day see his sister for a meal, plus my mother for a cup of tea before returning home.
This holiday has been a mammoth planning exercise, but half way through it has paid off.
Sorry, this has been a bit longer than I planned, hope it's useful. X
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As Jenni's husband (the BI survivor) I find it very useful read what Jenni writes as it gives me insights into what she is feeling and it may sometimes change how I react / respond to things that happen. As Jenni has said we have adjusted how we run our lives round my complications, we ended up changing our main car as following a car accident 7 years ago, she is only able to drive automatics and our main car was a manual, and by changing it to an automatic we can share driving.
Hopefully this will show that the use of this forum is a two way process benefiting both the BI survivor and their immediate family.
iam wife of b.i surviour,and its only me on here but i tell hubby about some of the posts and we have both found it helpfull.it is about getting back to new normal and moving forward as best you can
That you for your reply and Its been very helpful. Lisa my wife has contacted the Headway centre local to us and she is visiting them in the new year with emphasis on a careers open day so she can listen to other carers and and helpers and get some information from them.
Its difficult because from the out side and to everyone else I look completely normal like I did before, well as normal as one could be and that doubtful for some who know me. Im sure in time this will pass and we will grow to accept it and understand the changes I just need to educate people close to me like family and work colleagues on it.
I have had a chat with her this morning and she's keen to have a look at the site and try it out. She's not shy of input either and will relish replies and advice.
I popped up to my parents this morning with Headway booklets in hand and left them there so they could read through them. I highlighted areas which have and still are effecting me so hopefully this with help them. Although talking to them about some stuff they don't understand as yet but again they need to be educated too.
Onwards and upwards. XX
Just typical of me as I didn't see your reply tarlach, jumped straight in to Jennies post. Its sounds like you both really benefit from this forum so ill show my wife this thread. N
My SAH was 4 years ago followed by my ex-husband's SAH six months later. My daughter was looking for advice & support so she joined the forum soon afterwards, and then suggested I do the same.
This has been my lifeline and I've never felt inhibited by my daughter's presence in any way whatsoever, nor she by mine.
The way I see it Nick is that the more openness there is between you & your wife the fewer misunderstandings there'll be. If the disclosure of certain thoughts or feelings might shock or upset the other then surely that's all the more reason to air them so that they can be discussed and resolved.
It's usually the secret, undisclosed issues which fester and lead to resentment.
Some years ago my partner found, and was unable to resist reading, my diary. I was horrified and angry at first but it actually acted as the catalyst for a 'truth' session which lasted for several days and chased away many. many unresolved problems.
I think the forum could act as a counsellor who, like any good counsellor, just sits in the room prompting the two parties to speak through them.
Sounds like a good idea to introduce parents to official reading material !
My partner does read some of the posts on here ( usually if I draw his attention to certain points of interest ) but seems happy to stay as a 'browser'.
There is nothing on here that I have written that I would not want my partner to see - even the occasional frustration is said purely out of honesty !
I am having a problem with people around me understanding my current level of fatigue, ( which I'll admit is utter pants, compared with before my recent bout of illness ! ) So I find I am having to remind/justify my pacing/resting needs a lot more to others.
On the one hand I am often praised for how well I am doing yet on the other I feel like I am sometimes expected to be Wonderwoman, as people seem to expect more of me physically than I am able to manage at present, without incurring total exhaustion and sleeping for hours ! It can feel like others are pushing for more too quickly.
I am fond of quoting , when feeling under pressure and overtasked, 'Spend a week in my body - you'd run screaming' !
We know how to run our own ships ( bodies ) - we just need to pass that understanding of how things work onto others : )
It has been a washout today - we are currently flooded on the caravan park again ( were still clearing up after last flood a few days ago ! ) Went up to the river close by at high tide - we got lucky this time as it did not come over. Have been wading around in wellies, lashing bins to trees/ gateposts with string for us and neighbours to keep them from tipping over/ filling up with water ! Daren't have washer on as the water has nowhere to go other than increasing the level around us - nothing going down drains yet. I had so many cleaning plans involving water for today - minimal use only now, bummer !
Thank you for your reply and yes I love what you say about browsing as I think ill introduce Lisa to that first and see how she goes. Fantastic what you said too about spend a week in my body you would run screaming. I said a very similar thing to my Dad this morning. Its so right members of the family think you are doing well and are back to normal but little do they know its not that simple. I had a long chat with my parents a few weeks ago as I hadn't spoke to my Dad for 3 months and wanted to break the ice with him as I was ready to talk to him and it was an uplifting meeting and extremely satisfying for my mum but she now thinks its all back to normal and theres nothing to worry about, as we discussed to day I said to my dad ill happily swap you my mind for yours for a day and he doesn't really understand how we work and why should he.
Its up to me to help them learn what this is about and that it will take time for me to get back to some sort of normal living. As Lisa my wife says you want to live with him for a week then you would know what we are talking about. They only see me for a few hours at a time.
Im sure if Lisa was to read my posts and threads and others she would get much more of an insight to what I'm about.
So sorry to here your flooded out again it must be really frustrating as you can't do anything about it. God Bless and have a great evening and hopefully not in your wellies. XX N
I think it's a great idea for your wife to be on here! I am glad you think so too....that to me is the best way forward for you both. She deserves the chance to share her feelings too.... I hope she takes it. My hubby will sit with me and read posts, although he hasn't joined he is interested to read posts relevant to me/us! He's very good and is often first to tell me I shouldn't be doing something or asking if I'm sure I will manage! It would give your wife such an understanding of how things are for you and also give her the chance to see how others overcome their problems....she will see you/her are not alone with certain issues you may have. That has to be a bonus! It's a lifeline for you both and such a friendly group that I can only see her joining as a great thing. My husband has always been positive about how I will be, how I will cope, etc etc but by reading posts with me he can relate to everything I feel/say and also relate to how partners feel/cope too. I also relate to what you are saying re your parents as I too look fine but certainly have times when I cannot participate in activities for various different reasons...e.g. I know myself if I can manage to attend a family event, a meal out or whatever and although my mother worries about my condition she has been known to say that I could make more of an effort sometimes....which to be fair probably looks like it's true but to me knowing fine well it's not, it's very hurtful! I think you are doing a great job MXman and trying so hard for things to be as best they can and I hope it all works out for you all. xx
Hi Nick, I was very fortunate in that on at trip back to Uk, 4-5 months after my haemorrhage here and my finding of HW on the Internet, UK friend of mine took me to visit the Headway daycentre in Colchester. We didn't stop because the visit was not arranged but we spoke briefly to staff and could see some of the dificulties faced by the members there. We also went to the Admin office in town centre and we were both given some booklets..I was given the whole lot! Now it's possible to download all via PDF from here.
She genuinely is the only one who seems to understand what goes on with me, I tell her evergthing, and we still keep in touch by phone and email. So I would say yes, take those close to you, to a centre if possible. Then it's others they are looking at, all in different sooner or later stages after the cause of their BI's.
It's so difficult to explain the unexplainable (mood swings, personality, brain fatigue, balance, vision, hearing problems that arise, so many being 'slow growing' and later as opposed to immediately after the cause of the BI.
Only 'we' not 'them' live inside our own Skull, - because the Brain controls us - we DO NOT control our brains!
Our minds and remembered knowledge give us our thoughts our thoughts and knowledge so we can apply it as best as possible before the brain stops neurotransmitting all those messages into actions, acceptable, to us and others!
So yes, if your wife understands a little better, by becoming a Headway member in her own right, using if she wants, her own anonymous even to you, alter ego or whatever name, so she can read lots about what we say goes on and happens to us, but more importantly get support from other carers who will understand HER situation - they are also in the same boat, so to speak - just as we with the BI's are.
I think the carers have the harder job,not us, and also think I e written that before, as once my own sole carer and the one with the BI - Ive been known to chastise myself but most importantly Ive regained my religious faith, I'd never stopped being a believer in God, Heaven and He'll, being a Christian, but hadn't prayed in decades, and genuinely believe that has helped ME more rcently, in overcoming the battles I've had, and I still do, not just with health but other problems.
Whether at the moment, your wife would want you to be able to identify her on here, I don't know but also do not think so! She wouldnt want to hurt you or you her by committing to words all frustrations and anxieties with and about you!
First and foremost she will need to be a signed up Member of Health Unlocked - that will then give her access to ALL the HU communities which she can choose to join or not! EG - She mIght have Thyroid related problems for example. One of your children may have another health problem shed like to discover more about! As you know all the Communities are 'interest based/relevant. Hopefully she'll look at Headway, out of curiosity and interest.
Most carers say thats what they are, or what happend to the person with BI thT they are with and caring for - now I'm teaching my grandmother to suck eggs, explaining that, telling you things you already know I'm sure
Actually physically talking and knowing you both understand each other at some time in the not too distant future, may be the best thing for you both. Your parents are older,also your wife may have a better chance with them once she participates herself!
At the moment I'm jointly my own worst enemy and my own best friend and I'm comfortable, with that, at the moment! Yes I'd love to be in touch with my family - my BI put paid to most of that, the last of them quite recently. They understand nothing, so I don't bother anymore!
I do wish you and all your family well for the future. Copy and paste all this if you wish, print out and give it to her and/or your parents, if you think it would help.
What a fantastic honest reply, I had to read it twice so I could take it all in and this is why I absolutely love this forum, I know I'm in the right place here with people who understand the problems I go through on a day to day basis. I truly understand what you say about faith as I have mine too.
I too find it frustrating sometimes that talking to family members (my parents) that they say they understand but they don't and I know this due to when I say certain uncomfortable truths for instance that my sisters boyfriend is a d*** they try and explain why he isn't or have to justify he isn't and I don't want to argue but say my brain can't take that onboard so I can't waste brain power on it. But they still want to discuss it. Hopefully the penny will drop at some point.
Yes in some ways I think a BI often has an advantage in that it also clears a lot of old 'dross' out of the mind and gives us a greater clarity of thought now!
Sounds daft I know, but I try to apply more logic these days, although I'll still insist on things I know my health research has led me to, because I NEEDED to know the cause of and why my BI came out of the blue! I agree with you that some things will never change but my BI changed me. hopefully your parents will one day understand also, but I agree, the fact they don't, for the moment is not worth losing sleep over!
I fell out big time as I said on a post, possibly this one, with my daughter in law, over genetic links. Hours after I'd written that, a passing neighbour told me to look in my post box. When I did there was a Xmas card in there for me from them - and there was one from 'the whole Family' written by daughter-in-law.
You and I have ' talked' on here recently. My son had a SAH.
This site and forum help me enormously, I am always telling people about it and recommend they look at it.
I have learnt so much from reading the posts and wished I'd used Headway right from the beginning.
I share my feelings on here when I'm upset and need someone to talk to. Although my son doesn't go on here I tell him about relevant posts and tell him what I've posted.
I really would recommend anyone who is affected in any way by a BI goes on here.
It has helped both my son and I and made us feel less isolated, we all have lots in common.
It has taken a while to read the replies . I think it was Sambs who mentioned about late development of symptoms.
It might be just me but I knew I was royally messed up and went into automatic mode. Priority 1learn to talk.
As that began to improve other things became apparent. When my speech became passable and the tourettes had stopped then it was the to focus on being able to move bits independently of each other like opening packets and chopping things.
Recently I've begun to realise that life is a journey.
I know that is true for everyone but I think it is more true and has many more detours and dead ends for us.
I have my inlaws round today along with my wifes brother and his wife and kid and I briefly spoke to them as then went into my office around 1 and I'm still in here. I just don't want to talk to them as it will be a brain zapper, there are many reasons why and for me its easer not to be social and I'm sure ill be rude if I do.
Wife - yes bring her here, would be lovely to meet her if she is up for it. My OH doesn't do online stuff but is always interested to hear of other people's experience from here.
Parents. Just keep feeding them the info. It takes time. Plus parents never quite seem to get that actually you might know more about this than they do, at least mine don't. My dad thinks I should have the stent in my brain, even though the surgeon has said it might not work and will probably make me blind. Rationale? He has one in his heart and it's great ... totally different situations but he feels he has superior knowledge to me. Have to keep firmly sticking to my decision without upsetting him, because he thinks he knows what is best for me, and is I guess scared of the idea of his little girl having open brain surgery. That makes 2 of us... but all you can do is keep feeding the information through and hope in the end they get it and back you up.
Now thats the absolute truth malalatete my dad thinks he knows more about it than me and Im pretty sure he doesn't. Love what you said. God Bless. Nick XX
Visited family over Christmas,mdaughter and her family and friends really understood when we had to go bad to he hotel for husband to rest then return for tea.
Mother in law the next day, thinks everything is back to normal so we keep repeating and reminding, which is exhausting!
Then saw my mum and step father, mum doesn't get it at all! Step father tries,mthohgh we don't know him well enough yet.
Despite the trip being seriously well detailed planning, me doing all the driving and moving of bags etc husband came home totally exhausted and spent best part of two days in bed!
Yep MW you think they understand you and whats going on then they drop a bombshell.
My mum did as she asked if I wanted to come over for a few hours last Sunday with my sister and her clan all there after I though I made it clear that lots of people and lots of noise I can't handle, maybe its just me and they forget. I need to get a T shirt with some terms and conditions printed on it.
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Son with BI
Just a thought!
Thrown out of a pub for being drunk?
