I always see myself as approaching my condition or whatever it's referred to with great positivity and see myself as a coper but I admit I am struggling a lot at the moment. I have had an on/off headache since Christmas eve and today it is still banging. (obv it's a concern) but I'm getting used to knowing my life will be like this now and some days I'm reasonable, some days I'm fine and some days are a bit of a wash out really. However we have had a lot going on in the family (which I am not around very often) and I have been dragged into a situation that I'm not part of (to help) but it has ended up in me being upset and told that I am being negative about my tumour and it's not like I will die tomorrow!!! Along with you know you can't get more surgery the radiotherapy was your last chance (which is not the case). Where that random statement came from is beyond me as it had nothing to do with the topic of conversation and was shouted out! I'm gobsmacked to be hearing that I need to basically get a grip and there's a lot more I could be doing than I do etc etc! I actually plod on through a lot more problems than I even tell people about....and one is extremely embarrassing to me. I have headaches now since the treatment, I have facial pain, my ears feel like they will blow off any minute, I feel different to others, I hate noise as it bombards me and although I feel all these things I never mention them to anyone bar my husband who understands, so why oh why am I hearing all this?! I'm in tears typing and can't believe i was even told that if my life is to be cut short I can't dwell on it and need to get out more! Oh there was a lot more than that said too. I'm just floored... as to you all reading this it will sound like I'm constantly moaning to this family member but I'm not. I do my own thing, see to myself, get my household chores done, get the shopping in, walk the dogs, meet my friend for coffee, visit friends and yes lots of the time I get tired as I can't do late nights but deary me I promise I do my best! ( I'm upset about having to give my job up but I've never said to anyone although I've cried to my husband) I'm alone all day as my husband is at work then he studies in the evening. He is always there if I need him and we have a fantastic relationship that most would be jealous of. So really where did that throwaway comment come from and why am I hearing it, why am I being shouted at and why am I being told I can't have surgery again?! Do people not listen to what is going on and what my next steps are? Am I wasting my time replying to them when they ask how my appts go? I'm truly beaten as to why I am being told I am negative etc etc....I promise I am not but this is making me very wary that other people know more than me and maybe I haven't been told the facts....goodness me I trailed the city keeping myself occupied after my radiotherapy...I was alone living in a strange flat, to be near the hospital, I didn't see anyone for weeks at a time, I even went to bingo alone to see how I could cope in a crowd and how I would react to lights!!!???? I'm lost now and really feeling down. What on earth??? Now I have to chase the hospital up as my mri appt has come through for a month after the date I get my results on...how does that work....get your results first then go for mri?!!! People really do not understand what we cope with and I'm exhausted and going for a lie down and a box of tissues! Thanks for listening friends. xx
Struggling to keep it together sometimes... - Headway
Struggling to keep it together sometimes...
I am so sorry Peaches, I do understand. People just don't know the extent to which we, as brain injury sufferers, have to contend with.
I was out the other day, walking to the local shops, unable to see clearly and as you say bombarded with noise from cars passing etc, thinking why am I doing this?
We do it because we won't give in, many people do give in but I couldn't face sitting at home all day every day.
Yesterday I braved a trip to do some shopping in central Manchester, I was exhausted when I got home, but I'm sick of waiting/ having to ask my husband for help.
Personally I also have peripheral nerve damage that leaves the surface of my skin so sensitive when wearing jumpers it's a nightmare in the winter but I never complain, just get on with it, I have to try acupuncture now to try to alleviate that, I'm open to any suggestions.
I do understand where you are coming from, it hurts to be told you look well, when every day is a reminder of your illness because of what you silently endure.
Just remember we are here and do understand, I don't think you are moaning, share whenever you feel the need.
Love Janet xx
Peaches
If this situation has anything to do with your brother in law you could make excuses for the terrible behaviour by saying that they are in the thick of dealing with it.
Perhaps even offer them the Headway contact information.
But if all that nastiness came from one person then it may be time to write them off or at least ignore them. When was the last time they took responsibility for anything on their own much less brain surgery away from home and alone??????
Sorry I feel myself getting really wound up.
Back to what's important.
Make sure that you take care of yourself. Write yourself something so that you can see just how much you can do and how often.
Yes contact the hospital and ask what is going on.
It may be that the results appointment is just a discussion of how you feel you are doing post op with the MRI scheduled for a medical point of view.
Sending you a massive virtual hug
Oooooooooooooooooooooooooooooo
Love n hugs
Xoxo
xx
I've always seen you as, first and foremost, brave. You came to us as a terrified lady facing a life-challenging op................then almost immediately after the op you took control and just got on with it.
I'm wondering, like randomphantoms, whether this person is closely connected to your brother-in-law, as that could suggest someone who's close to the edge and not thinking straight.
I'm guessing of course, but I'm disgusted that anyone could even think, let alone verbalise, such cruel and inappropriate comments. Someone to be avoided in future, at all costs, I believe.
The appointments sound like administrative errors. I was scheduled for an op. a couple of years ago but then received a letter of cancellation. It told me to wait for a further notification of a new date. The day of the op. I got a phone call asking me why I hadn't attended and telling me I'd lost my slot !
So, as your appointments are with two different departments, there's a good chance of a crossover.
I hope you'll find the wherewithal to disregard those hurtful remarks and keep the person who spoke them at arm's (at least) length. I've always found that where there's no explanation for nastiness, the root cause is almost certainly jealousy.
Please remember Peaches that you're a lovely, gutsy lady................................................. and just keep doing what you're doing, and being who you are. With love, Cat xx
Hi Peaches, Tough emotional honest words, I truly hope your ok. XX Nick
Hi Peaches
Sorry that you have been so upset.
You know how people sometimes open their mouths without putting their brain in gear? Trouble is when you have a little understood condition to deal with people have a habit of opening their totally ignorant or misinformed mouths without putting their brain in gear, which just compounds the issue really.
Don't doubt yourself, your determination to date, or your inner strength which will continue to see you through. But don't dismiss your hurt and pain either, you are entitled to be very upset by such insensitive claptrap.
In such situations ( my extended family can be a bit of a carcrash) I tend to write my feelings down in a letter which I then stick on the mantelpiece. If a few days/weeks later the hurt is still there I consider sending it. Usually the fact of having written it has done the job and I am ready to move on. See if it helps x
xx
Ah, Peaches,
Hope your lie down was refreshing and you had enough tissues ( I might have been tempted to line the offenders mouth with them instead, to soak up their drivel ! )
Other people's expectations, eh ? Better still, their utter lack of appreciation of the facts and self appointed expertise in your medical matters ! Thoughtless, senseless and pointless.
As I always say, give'm a week in our bodies and they'd run screaming !
Sadly, we can't get away from our conditions for a nice bit of time out and have to meet the challenges head on, 24/7. This we do with good grace, humour, only an occasional moan and a wealth of carefully devised plans and pacing techniques.
So sorry you had to give up your job - mine is only a nine hour weekly cleaning stint but I would still be sad to lose it. On the plus side, it allows you the freedom to decide on what you can manage and when. Emphasis on you , not what others think you should be capable of.
From what you say, it sounds like you generally do well with managing your time and energy, with the odd 'duvet day' as we all do when necessary : )
Coming through all you have, with such steely determination takes a special kind of person x
Sending love and enough virtual tissues to soak up a torrent of ignorance ( might be a world record to be had there - number of tissues you can fit in an insensitive person's mouth ? )
Angela x
hi Peaches, I think you are marvellous, doing all the things you do, no doubt having to push yourself sometimes. I think you need to reduce the amount of contact you have with this negative, ignorant person and don't let them have the opportunity to bring you down. It's them that have a problem and they cannot take it out on you.
Be proud of yourself Peaches, you are doing brilliantly. xx
On reading your moving words a couple of quotes come to mind...
"You are not entitled to your opinion. You are entitled to your informed opinion. No one is entitled to be ignorant."
Harlan Ellison
"The evil that is in the world almost always comes of ignorance, and good intentions may do as much harm as malevolence if they lack understanding."
Albert Camus
Take care. Don't listen. Keep strong. Stay you .x.
xx
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