I will try and keep this short! My son and his partner paid for me and his mother in law to go to Rome for five days. Family assistance was organised. First problem was a delay at check in. The woman just sat on the phone for ages, and it was my ticket that was a problem for some reason. I became quite anxious , the girl on check in said nothing, I said to my son 'look their family assistance is going through and we were not. We had no time and had to go straight to boarding.
We arrived and waiting a long time for hire car, whilst mother in law was speaking. In Italian. It was a long process and was late. I went straight to bed and the rest went out to eat. Next day had a quiet day, but did not go to dinner in Rome which was about 40 minutes in the car. The mother in law I always had a good relationship, but she can be overbearing (ex teacher, sorry and teachers out there!) I felt like we were on a bloody school trip!! Her son told her to shut up a few times and no he did not want to get up at 7 am as he was on holiday. We visited the Vatican , no mother in law as she had visited it twice, and went shopping. She dropped off at the front so had to walk for about 20 minutes to the back. Alex got a wheelchair for me, but I got very stressed about the stairlift and could not understand how it worked. I nearly didn't go to the Vatican, but thought I be in a wheelchair and okay.
We met Gail's (mother in law) friend for dinner and they laughed all bloody evening about the time they taught in school in Italy. And we met her another night too.
on the last day I was getting vibes from Gail that she wasn't that happy with me, and I said sorry my speak is slurred as I am tired, she replied we all get tired, so I said goodnight and got no reply. The next day our last day they went off to look t yachts and Alex and I sat down by the restaurants and said which one we should go in. He said wait for Gail and I lost it and said why does it have to be about .f....... Gail's decision all the time. Alex said I was fixating on Gail and that she was just trying to help as she knew the country, and noticed I had rolled my eyes earlier. Alex said I have spent a lot of money on this trip and he was trying to keep everybody happy (which made me think that something had been said) . I said I would give him the bloody money back, and felt like he was making it was me that was the problem. He said my brain injury had changed me as a person, and that I seemed shyer . It is hard to talk when Gail is around as she is constantly talking!!! It really hurt what he said and I got confused and he said he was not going to keep going over it. I said I was in pain and tired and he mentioned I had not looked happy , but when I tried to pin him down about it, he did not elaborate . I felt hurt and upset. I never thought. I would hear my son say those words. Yes I have changed, and fatigue makes it worse, but I thought he understood. We were driving back last night and Gail was sitting in the front and just rammed her seat back as far as it would go into the back of my knees. It was done hard and fast and no do you mind. Alex said all families have ups and downs and this is our family now. I am not sure I wanted to be controlled by a woman who clearly wants everything her own way. She practically lives with them. I feel hurt and upset. I know the holiday was too much, but I tried a couple of breaks. Alex rubbed my leg yesterday on the plane, but it does not take away the fact of what he said. I know I. am different, but I do not like the negatIvity of how my son said this. I think it was too much a responsibility for him, but I thought Gail would help more as she did in the past when I lived with them for a bit, but no. I said to my son Gail had made some not nice remarks when nobody was around, and all he said was Gail likes you. I felt he should trust what his mother says. He has fallen out with her before over a birthday.
Sorry for long post. I do not know what to do.
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Sem2011
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I am so sorry that your holiday didn't go as well as you had hoped. It is difficult for families to understand the changes that you have had to make to cope with the fatigue etc.
Hubby and I have just missed a family holiday in Italy as, after long discussions, we decided that there was too much going on in one week for hubby to cope with. Some of the family have made nasty comments about the fact we did not go, which has hurt, but I have decided that I made the right decision and if they cannot understand that it is their problem not mine. Mind you it took me a few weeks to get to this decision.
Perhaps in a week or so you could try talking to your son and explain how different places and unexpected events cause you difficulties, plus what you need to cope with them.
Maybe his wife and mother in law are giving him grief and he doesn't know what to do. I am sure he did not intend to upset you and possibly this holiday really brought home that his mum has changed a bit through no fault of hers.
I am sorry you have experienced difficulties within your family, but as you say ,you know your husband's capabilities. Yes, it does hurt, but they have not walked the path that we have and how it truly affects us.
He is in denial there is a problem. I wish I never went on holiday. He has already text me saying what a great holiday it was, and when I said I was a bit upset he told me not to be so silly so I did not go much further, but I know even if I wait I do not think I will get understanding.I need.
I am pleased you have come to terms with your decision, and know it is the right one for your hubby.
Oh so sorry this turned out this way. It is hard with extended family -they know all about it, so like to think they really do know all about it. It usually is something like a holiday which exposes their total lack of awareness (I will never forget the sheer horror on my parents' face when I crawled up the staircase on arriving at my sister's in the Isle of Wight. Standard procedure for me at the end of a long day's travel but they were dumbstruck).
I do think with these sorts of things it is important for others to know how you feel particularly when they seem to have missed that. But I prefer a note rather than trying to talk about it - it is too easy to get tongue-tied and lost for words otherwise.
Setting the complication of families aside, holidays in themselves are wearing: routine and familiarity goes out the window, everyone wants to be constsntly off somewhere, even if it is just pool or beachside. These days we dp shoter trips with stuff the others van enjoy and I focus on a comfy armchair, books and having days of peace and quiet. It is hard to explain to people that that is what is needed though, like so much, they don't get it at all.
I hope you and your son are able to have a free and frank exchange, it is important for him to understand that you are not just being difficult and to honour that by being more supportive.
Yes writing it down is always better as the written word sets out clearly how you feel, and I do get confused talking, especially if I am upset. My son has already said what a great holiday it was, despite the comments he made, such as I have to get you to the airport and it was hard getting you to Rome. I am really upset and feel let down
Oh Sem you sound really hurt and disheartened ; I'm so sorry. It's awkward when it's an in-law because there isn't the same familiarity which allows us to talk freely, so instead of clearing the air we end up festering with resentment.
Your son will be very torn between pleasing you and his wife's family, and even if he secretly sympathises with you, he's damned if he dares to say so.
I agree with MW that putting things on a back burner for a week or two is the best option ; then speaking privately with Alex about how upset you've really been. We often say things which might be better left unsaid when emotions are raw, and it would be making a bad situation so much worse if it caused a rift between you and your son.
Such a shame. But it's another example of how others can never get to grips with the issues and needs of folk with BI., not even our loved ones.
Take care m'dear & I hope this will be resolved before too long. xxx
Thank you so much Cat. Yes, it is hard when your loved ones cannot see how much it affects us. Alex is my only son, and contacted me today and said what a great holiday he had, and seems to in denial there was even an incident. You read me well, I am upset and dishearten. I feel like we were on a different holiday. I started doubting myself, but my partner said to write it down before I forget. My partner is absolutely fuming, and he cannot believe how this has fared and how upset I have been. He knows it is not a goo idea to talk to Alex, but angry that I have come back so upset. I guess we live and learn. Alex is very stubborn and even as a boy he would not admit he was wrong, and he is still the same perhaps more so now, he has a business and money. I am still reeling from losing my dad in March. I did not like the arrogance of stating 'I have paid a lot of money for this holiday'. It was like shut up, and enjoy. I felt like the child. I know emotions are high at the moment.
Thank you Cat. Have you had your hOspital appointment yet?
Yes, it's 1st Oct with the endocrinologist. And this Friday I'm attending the hospital where I had my brain op to take part in a trial which is also relevant to hypopituitarism. So who knows ; maybe a diagnosis ??
How are things going with rehab Sara..................have you managed to deal with the fatigue ? xx
PS I can't let injustices go either ; it's so wearing when I just keep playing stuff over & over in my head but it's so ingrained in my nature. I can fester over issues from years ago. So I do understand how you're feeling, and hope that Alex will come up with the right words to put you back into a good place.
Good luck Cat on Friday with the trial, and hopefully a diagnosis!
Can I ask what is hypopituitarism? I guess something with pititutory gland?
Yes, I am too hold on to injustices and I think perhaps more heightened post BI or just could be fatigue. I feel quite sick and not sleeping, I hope he speaks to me soon.
Thanks Sara. Yes it's testing for dysfunction of the pituitary gland, which I hope is what's the cause of my symptoms. It means I have nothing to eat from 10pm the previous eve and only water to drink 'til 3pm Friday, and involves frequent monitoring and blood tests.
It's partly loyalty to Salford Royal that I'm taking part. I took part in a drug trial whilst I was still in rehab and now, 3+ years later, they asked me back to do this one so it's the least I can do after all they did for me. I would've done it regardless of my own interests.
Fingers crossed for a new leaf with your Alex when he gets home, so you can put the whole unpleasant business behind you and finally sleep at night. xxx
I feel for you and hope that you can begin to relax now that it is over and find that there are happy memories that will shine brighter as the weeks go by.
There can be few things more trying than a family holiday abroad and especially when everyone is trying to adapt to everything being different.
Perhaps now that you are home you could print your post and use it to make points to discuss with your son and the mother in law. It could just be that they are not used to seeing you have the level of difficulty you experienced.
Also writing down some of the coping strategies you use could help them to understand that you were not being shy you were coping the best you could.
I'm so sorry it seemed more of a trial than a holiday at times ! It is always difficult, going as a group if your desired activities and levels of ability cannot be taken into account. Other people's expectations, especially the more dominant ones, often exceed our capacity, I have found. I feel that your son will have been trying to be fair to everyone and not mean to cause any upset.
Hey, you tried, it didn't work out the way you would have hoped - hindsight is a great thing !
Life is short - you never know what is coming next.We as survivors understand this better than anyone. I would hate to see this cause a rift between any of you.
So maybe you have changed since BI - haven't we all to some degree and we are stronger for having to adapt our lives around the challenges that it brings. Our heads have to work uberhard to captain our ships - no wonder we get tired !
I gave up resentment a while ago - I decided that for me, it was not constructive and took a lot of energy, energy that I would rather put to better use on the things that I want to do and enjoy. Nowadays, when someone fails to understand my level of ability, after explanation, I think of it as their problem, not mine. Either they will learn from future dealings with me or remain oblivious ! It won't change my abilities, either way !
When pushed, I take the stance of ' Hey, this is my ship, don't tell me how to steer it !
Having said this, too much allowance made for fatigue levels can also work against me sometimes ! I have a habit of taking a 'nap' on a Saturday afternoon, especially if it has been a full on week. Said 'nap' can easily turn into 3 hours ! If my partner comes home early from his parcel delivery job and finds me asleep he will leave me be and sometimes go off round the shops.When I eventually wake and find out he has been somewhere interesting, ( which is anywhere that sells garden/shiny/pretty/heartshaped things ! ) I feel like I have missed out and ask him why he didn't wake me. Poor fella, he must feel like he can't win sometimes !
I have to concede that if my body has zonked out to that degree, he is most probably wise to leave me be !
I do hope you can find a way to make peace with the less than pleasant parts of the holiday and remember some of the better bits.
Thanks Angela. Yes, it was a trial! Rather than a holiday. I felt great pressure from Gail, the mother in law. She would constantly moan because the boys wouldn't do what she wanted, and call me at 7.30 am in the morning, it is no wonder I lost it.
I have emailed Alex but he is in France. Hopefully, we can chat when he gets back.
I am a bit confused about steering your own ship? How do articulate that to people?
Yes, it is nice to catch up on sleep, but yes I too feel damn I missed out! But I guess our bodies need it
Thank you for replying. How is your spascitity? One positive of Rome was the heat, which helps my spascitity.
Wow, mother in law sounds rather full on ! Did you not speak to her about the early calls ,something like ' Would you mind not ringing until after such a time, as I need more sleep than the average person or I'm a bit zombiefied ! '. She clearly sounds like she has no clue how your system functions so will need to be politely educated.
One thing I have noticed is that people often think of your recovery as a constant upward improvement and can't understand why you still have problems and are not back to how you were after a reasonable amount of time. I am thinking about how helpful Gail was in your early recovery compared to how she was on this holiday ? Perhaps she has made the assumption that you have improved more than you actually have. Everyone is different, according to where and how severe the injuries are. I am almost 3 years on and not much different to how I was at the 6 month mark ! : )
Don't assume that anyone will recognise the signs you exhibit when you are getting tired - some people are just not that observant !
Explain about the fatigue and payback when you have overdone things in a matter of fact way. Humour often helps to lighten the tone : )
'Steering my own ship' refers to how I run my body . I have been sailing on the 'Angela mark 2' for a good while now and although the controls are a bit dodgy, because I know them so well I have found a way to get the most out of them ! In other words, I know what I can reasonably manage, physically and energy wise. So in a situation where someone was pushing me to do more than I feel I can manage I would be inclined to say in an upbeat way ,' I would love to do all these things but I will have to pace myself and pick and choose, as I know I won't manage it all'. You can then decide on which activity you would prefer, hopefully with other's understanding : )
Also, if people are getting on your 'paps' fatigue can be a handy excuse to remove yourself from the situation ! : ))
Holidays are supposed to be a relaxing, interesting and enjoyable time - not a frogmarch through a scheduled timetable !
It is okay to not want to join in with all the communal activities. Fine to need some quiet time and do your own thing. Polite but firm is the way to get this across, I have found. ' I''ll sit this one out and have a rest thanks, so I'm fresh for the restaurant later ' or whatever . We are not 'party poopers', just people that have to pace : )
Glad that the climate suited your spasticity better. For me, I find the extreme hot weather makes my legs ache more ! Then again, the cold tenses everything up - I guess I am a middle of the road type of gal !
No still waiting for medication to reduce the fatigue, as consultant said rehab would be counterproductive .
Yes, I did say could you have phoned later, this was our last day. Gail was more understanding nearly 2 years ago as My fatigue was worse and I spent a lot of time in my room, plus I was very passive as had other issues going on.
My son is now not talking to me. I give up! He doesn't seem to want to understand. I cannot force it so left it
I did pass on going out for dinner the first two nights, but we were only there 5 days. I did turn down a couple of walks around a yachting quay as Gail and James are great sailors. Yes, was not relaxing at all. In fact I am still recovering from it now. Hope all is well with you
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