Really angry and quite upset

General
1

I feel that I am wasting my life.

There are several things I struggle with doing because of my brain injury. I can't drive so that means that there are 101 things I don't do.

I have a volunteer buddy' but she isn't able to do things. I have been told by family that I 'just have to do things on my own' that 'no-one owes me anything' ({eg a nice trip to a beach or the countryside.)

I am seething. I do everything on my own anyway as I live alone. So if something needs doing I do it. I think I am owed a little respite from the stresses of living alone and figuring everything out on my own on a daily basis.
I am thinking of paying some-one, like a personal assistant so that I get a fuller more satisfying life.

Is that so unreasonable?
I have told the person who said the above not to contact me.
I have also recently met a nice man, and have been 'advised' to tell him I have a brain injury! I am lost for words. He would run a mile. I am sick of well meaning people making me feel XXXX

Sorry
Flower

2

Faith. If you have it, embrace it. If you know it not, get to know it. If you have lost it, reclaim it. If you deny it, come to rejoice in it.

This is what keeps us going. This is what drives us. When times are dark and there is no light ahead, faith can drive you onward. There is no other force upon this earth that can heal you and move you as faith can. Family can come and go, friends are rare indeed, yet inside your heart you are you. You know yourself, and what you need. Have faith, embrace it, and tell this world you will not give up! That it can not defeat you, that you will defeat it!

Maybe this man would not run....I didn't when my wife was diagnosed, and I still stand by her side. Faith alone kept me able and willing..

3

You sound really frustrated. I can relate to that. I try to focus on the good things I CAN do. Negative thoughts only run a "loop" in my head, I know it's hard to focus on the good when everyday there are constant reminders of what can't be done in life because of medical crap. If your guy bails on you now, would you really want him around anyway?

4

Hi Flower,

I'm sorry that you are feeling so frustrated, but I certainly understand why you feel the way you do. No one can suggest you feel differently--you feel how you feel, period.

My suggestion is that you take a positive action to cease associations with those that drag you down. At the same time, start positive action and a plan to develop a support network of those that will build you up. You need a wider circle of friends on your team.

If it's new friends, people from a church, people from a soccer team, counselors, whatever. I'm not familiar with social services in the UK, but I'd start with that approach if it exists.

As for telling the new male friend, yes, I think you should, but he might be a good friend even if not boyfriend material.

Best Wishes, and let us know how you are doing please.

Ron, KS

5

You may benefit from counselling and through the trauma of avm you may have be suffering a bit of PTSD. Your quality of life is being effected and with the help with counselling you may be able to cope better with what you have and be more positive. Be patient with people around you, it’s not that they don’t care it’s because they don’t fully understand the impact an avm has on your life. As for your partner and should you tell them - the best support you can have is from some one close to you… Personally I would but that’s just me. Goos luck and happy smiles.

6

Rich,

Great suggestion. Wish I would have thought to suggest it.

I think the best place to start would be with a counselor, a minister, or a social worker that Flower trusts. I can speak personally from experience: I was so stressed, anxious (anxiety), and depressed, I DID NOT EVEN REALIZE I WAS THAT WAY. I knew I didn't feel well, and attributed it to stress. Well, that was part of it. It took me like four sessions to even figure out what all the issues were that were affecting me. The short list was: My wife had an AVM and had had several surgeries. My son had epilepsy and was considering brain surgery to fix it (he did two surgeries, and thank God and the DR, he's seizure free now), my work situation was sucking the life out of me, I had some medical issues myself, and then all the day to day stresses like keeping up a house, paying bills, exercising, yada, yada, yada.

After the fourth session with my great counselor, I finally was able to sit down at my computer and did a four page outline of all the stressors I had. When my counselor read the BOOK the next session, his comment was "Gee, Ron, I'm surprised you can still function at all!"

Once I got passed that step, he recommended some books. I'm mentioned this one several times, but to me it is very good. Not a replacement for good counseling, but an easy to read self help workbook. Don't buy the regular book, just get the workbook. I bought both and the workbook is all you need.

Title is The Feeling Good Handbook, by DR David Burns. Printing in late 90s. Don't let the size of the book scare you--you can read it all or it's broken down by sections.

I especially like the anxiety test and depression self test in the book. I take them about every six months or so to see how I'm fairing.

Again, not a replacement for good counseling, but it was a great supplement for me. Costs about $15.

Disclaimer: No association with the book or author, other than satisfied purchasers.

Ron, KS

7

Thank u for the suggestion ron, I’m getting a copy next weekend!

8

Might go straight to Amazon. Not sure bookstores still have it.

Best wishes,
Ron, KS

9

Flower I certainly understand your frustration. I am very lucky to have a husband and children old enough to do most things on their own. I am certainly not alone in this and I am thankful every day. I can't imagine trying to do it all by myself. I know I could not so I applaud you for being able to live alone.

I think it is quite reasonable to find someone like a personnal assistant to help you. But take Ron's suggestion and see if there is something like social services in the UK. There may be services that are available to disabled people. Here in my town there is a transportation service that will take me places for a small fee as I am unable to drive also. It's a service offered to disabled people and seniors and it's very helpful to me.

I believe telling the "nice man" about your brain injury would be a good thing. If he really is a nice man he'll stand by you and help you. If he runs, well you're better off knowing that sooner rather than later, yes?

Shoot me a message if you'd like to chat. I'll be thinking about you!

10

Hi Flower
Hope Things Are Getting Sorted For You.Thinking Of You.I Think Your Male Friend Would Understand Your Brain Injury.I Think You Should Tel Him.
Thinking Of You Good Luck.
Crystal x

11

Hi Flower, I’ve been really Angry too in my experience this year. My own retired Father was “too busy” to take me to my Neuroligist appointments when I couldn’t drive for several months! When I was 1st in the hospital & being discharged he had to bowl… Leaving me stuck an hour from home having massive brain seizures with NO other family members that live with in 8 hours of me!!! Trust me… I get it!
It’s been my friends that brought me home & took care of me & my son as I’m a single mom. Work friends that sent food to the house & even came and cooked for us!
Called daily & stopped by to make sure we were ok & took us every were we needed to go & made sure my son still was able to do things he wanted to do NOT my family! My dad barely called… Didn’t stop by, didn’t drop off groceries or even offer knowing I couldn’t drive!!!
You have ever right to be upset! I cried about it for awhile & it still hurts months later… But I decided to surround myself by the people who truly LOVE & SUPPORT me! MY FRIENDS!! They took me everywhere, I am able to drive again, my brain seizures have stopped.
As far as this new man in your life… I agree with the advice of everyone else. You can’t start off something new with secrets, it’s not fair to either one of you. You aren’t being true to yourself & will make yourself anxious every time you are with him & are not allowing him to decide & know about your AVM. Just tell him.

It’s a birth defect we were born with… And it makes you that much more unique & special. And hopefully this man will see that!
Good luck… Thoughts & prayers are with you! Keep your chin up! Surround yourself with more positive people!
I have a saying… We can pick our friends… But we can’t pick our family!

12

I can sympathise as i have never been able to drive and I hate it. I live in the UK and feel like a second class citizen. I don’t know your circumstances, but if this is a long term condition depending on other factors you might be able to claim benefits to help towards paying to make you more mobile. if you are interested have a look at the Citizens Advice Bureau website. (Apologies if you already have this info).

If you have symptoms such as seizures it may be best to tell people you get to know at least something about what has happened or you could just say you have epilepsy/sight problems or something else. You need to think about what to say if he asks you why you can’t drive. However all that depends on what you feel comfortable saying and how close you become - its completely a matter for you.

If you can employ someone that sounds great.

13

Not being able to drive is incredibly frustrating, I remember. Is biking an option for you?

On relationships and AVMs: I would say that any decent person will NOT run away. I have been in two relationships during and since I had an AVM, and both were supportive. I would tell him eventually. just don’t lead with it. It’s a major part of your life, yes, but it’s not WHO you are. Right? Don’t let it define you. I mean, we all know those people in our lives who will always try to tell you about how horrible they have it and can’t talk about anything BUT that. Don’t be THAT person. If you acknowledge your condition but keep an upbeat attitude despite it, people will respect your strength.

Good luck!