Let's stay connected

[Iwona084]

I have recently posted on here and got many advises on how to cope.

Basically to take meds, to follow my heart, to move etc. These are all great advises and I will seem ungrateful, but the reason I am posting here is to talk to people, to share and to connect. I am not looking for a menthor or guide, I am looking for a - lets call it - transition companion. I know I am going through a change and that change is very difficult for me. It is unbearable and impossible very often. It is not connected to brain injury only, it affects every part of my life.

I often get advises and reminders that others has it worse, that I should be grateful to even have a partner I can rely on, that I have family etc. I know intentions are good but I feel shamed by this. For this reason I thought I will post again, maybe last time and will show and explain that I am looking for connection. Maybe I do not express myself clear enough in english, as you know it is not my first language (which I have also been reminded of in here), but I am trying to find someone who has similar experience. Just because we all had/have brain injury it does not mean we know all about another person's case, story, feelings, situation etc. I often receive messages or answer to my posts which show only understanding and "virtual hugs" - this is great, this is the best thing about this forum.

I have gone a long way, it is now 2,5 yrs after my surgery, believe me I have talked to dotors, I have done research, I had tested my blood, I had seen therapists, psychiatrists, psychologists, neurologists. I have talked to priest, I have gone through herbasl treatment by monks, I have tried exercise, I have done rehabilitation, I have checked my vitamins level, I tried to eat healthy and stayed hydrated. I have done all and more to help myself.

But sometimes I still find myself in a dark place where I can only be needy, complaining, even arrogant or rude sometimes. But this does not define me.

I struggle, I do and I know this is probably the most personal post I am writing here, but I want to thank everyone for their advises and ask to stay connected. Make time to listen to another human being, it does not have to be me, but this is my message to everyone who struggles, I want to connect. Not only advise or guide, but connect.

It is my deep feeling that this is the core of healing process - ability to stay connected to other people. Just because we all have brain injury it does not mean how another person feels, and what helps us may not help the other person. Let's just stay connected!

[Kirk5w7]

Iona, for the most part we understand, this is your life and you must live it your way. We do not judge, people are always quick and ready to offer advice, and you will read and discount that which is not a fit in your life situation.

Your choices are not easy, the brain injury does not help.

Just remember that when you make choices for a path to take in life, it is the right one for that moment in time and should never e looked back on with regret. Looking back and saying what if is never good, looking forward to the future serves us all in the best way.

So, whatever your choices are, they are yours and yours alone to make.

Much love

Janetx

[Hidden]

Hi Iwona,

I think people understand more than you think. However, everyone's life is different, changed by their circumstances, their character, the people around them so no-one can ever be quite the same.

I do think though, that the people who have accepted their bi and learned to live with it, will have a much easier time than those who are constantly fighting it. To be only 2.5 years from your bi and to have done so many things to find a way round it, change it, cope with it is amazing but maybe now it is time to step back and say 'this is how I am, this is my life now, I will make it the best I can the way it is now'. Maybe in this way you will find the peace you need to get the best life possible for yourself and your husband.

I am sorry if I speak out of turn here, it is just my personal opinion, but reading back over your posts you seem so unhappy with how your life has become. I wish you peace of mind, to accept what is and to learn to enjoy the things you have now. Please stay in touch, I am sure we are all connected with you enough to be concerned for you and to be hopeful for better times in the future.

Jan x

[barny1]

Most of the time I assume people want advice when they post here, but I agree it can be helpful to let it all go from time to time and just be listened to. It's easy to assume that if someone posts here they're in a desperation situation and need help and advice, forum regulars are so used to that scenario, but I suppose what you'd like to hear is that others have gone through similar experiences to yourself?

[Iwona084 in reply to barny1]

Hey Barny (not sure this is your real name, is it?), I post here because I need help. Sometimes this helo can be given as an advise, and I gt so many great advises. But sometimes, I just need to talk, hear others, someone telling me " I know your pain", or " I have been there". To be honest I dont have anyone really to talk about what happened to me. I get distant and close myself in front of the other, so this forum is actually the only place right now I can share my feelings.

You are right, I would like to know others here, know their story, their battle, just know people better.

[barny1 in reply to Iwona084]

It's not my real name

I think I understand you now, you're right people's advice can be their way of making a connection however some may be reluctant to share their own experiences on a forum which others may read because of feelings of shame/guilt/embarrassment even though that's one of the purposes of the forum, others may be ok with sharing things in a PM.

I get the impression you're quite isolated having moved to another country and it's not helping you deal with your brain injury or has added more stress that's making its effects worse? I once went to live in Germany whilst I was studying there and the culture and language was a shock, I felt very alone as my BI in addition to doing a masters degree made making friends an impossibility, my depression worsened and I was only too glad to return home at the end and grateful for our NHS, flaws and all. It struck me that if I needed to get medical help I couldn't expect them to be nice and speak to me in English just because I was in their country, the thought that if I needed help I'd have to overcome a language, cultural, brain injury barriers combined didn't help my wellbeing.

So, I have great respect for you to be in another country and speaking their language, it's not easy, notwithstanding a BI. Have you been able to connect with other people from your country? If so, is there a feeling of shame of having a BI that may be stopping you from getting help? Sorry, if I'm giving advice where it's not wanted.

[Iwona084 in reply to barny1]

It was a tough decision to make to move to the UK. I have previously lived in Wales, Scotland and France. After my surgery I had to leave my flat in Warsaw and move back to my parents. This was even more difficult. My husband has been living in the UK for 12 yrs now and I had to make a choice. Im open to other cultures as I have always worked in multicultural, global environment, so this helps to be in a foreign country. But you are right, I feel isolated and also worried as I dont know what is going to happen in post-Brexit reality.

I had medical help back in Poland which was MUCH BETTER than here. Thankfully I had all the tests and checkups as it seems impossible to get them here. The only thing I was not happy about was psychological help. It took me more than a year to find a new therapist. Now I have to look again in here and this is just overwhelming. Headway suggested Mind Works and I will probably give it a try, but honestly I feel tired by just thinking I will have to tell my story all over again.

I am not feeling ashamed of BI, I dont know rules here, I dont understand why there has to be a letter by post sent for any meeting, why I dont have copies of my blood results with me and how I can get refferal to psychologist. I got reffered to neuropsychologist, but she told me they offer only short term support. What is the point then? I do not feel comfortable opening up if in few weeks I will have to talk to someone else again. Also, what about the rehab? There is no rehab, or I just dont know how to get it. You see, I am a bit lost in all that and this puts me down a lot as I know in Poland I would know exactly what to do. It does not mean I would not get frustrated by the service, but at least I will know the rules.

Here I often feel like child in the mist.

[barny1 in reply to Iwona084]

It doesn't surprise me that you had better care in your country, the NHS is free should you need it, but in order to work it has to be very efficient. You used to be able to get boob-jobs on the NHS when funding was generous and the economy in a good state, not anymore thankfully. And even neurocare used to be better, a lot of services have been discontinued such as vocational support and other services such as Speech and Language Therapy are reserved for only severe cases as doctors have to be accountable to their NHS managers and Clinical Commissioning Groups who've had their finances cut by government. As a result, if something isn't totally necessary they won't provide it. Conditions that aren't seen as life-threatening or aren't likely to improve are downgraded in terms of the help and support provided. Unfortunately, chronic brain injury is seen in this way, which is sad because people with brain injury can improve their condition and quality of life provided they're supported in the right way over a long period, but this falls outside of the NHS's remit.

Yes, the system is diabolical at times, I had to wait about a year to see a neuropsychologist and during that time my mental state got worse. I know some people wait years, it's unacceptable and I hope it changes, but the cynic in me feels there will always be hard times and the weak will suffer most, it's a fact of life. I feel we're quite compassionate towards the people who need care in this country, I know other countries aren't so generous and you need health insurance. Private healthcare is always going to be better in terms of accessibility to services, money is what makes the world go round. I agree, the NHS can make healthcare less personalised and you can feel lost in the system as it's so massive you cannot possibly expect to always see the same doctor who you've known for 10 years who lives up your street. You can feel like you don't matter and the doctors are just ticking boxes, part of the reason for that is supply is too low for the demand that you only get max 10 mins to explain your life story. About the blood tests, again they'll only do what's necessary and justifiable and not necessarily do it for your peace of mind, if you had private health insurance your doctor may suggest you have routine blood tests every year just as a matter of course, money is no barrier. You can access your medical records including blood test results as it's the law, you may need to pay a small admin fee however. I think what you'd really like is for your doctors to elaborate more and take the time to explain something you'll live with for the rest of your life in more detail?

There is rehab, just not always on the NHS, you have to either go private or try alternative therapies as many of them have good evidence that they work but the NHS is always the last to include them as part of their service as the standard of evidence has to be of a very high quality and/or there's a financial argument, without these barriers I can see why other countries can have better neurocare. Hope you get the care you need even if you have to move for it.

[Iwona084 in reply to barny1]

I thought everyone has to do blood test once a year. Especially when struggling with a chronic thing. I don't say healthcare in Poland is better; I don't think it would be fair to compare big cities in Poland and small English towns. I know that private healthcare is easier and faster but from experience I know it is not always better, at least not in Poland. I have more trust to doctors who work near hospital rather than offices in some shopping malls.

I was very happy with my neurologist here but then many months passed until I actually got appointments he referred me to.

I noticed 10 minutes and one visit one problem. This is just stupid as sometimes you may feel you discussing different things but they can have one cause. Doctor should listen and make connections. 10 minutes is fine when you have a cold but not severe illness or condition. I had this gp in Poland who never cared for time. There were bad sides of this - you could wait forever even though you got appointment at specific time. She would never let you feel you should go. But she is one of the kind. Private healthcare doctors would often say - our time is up which is ridiculous. I'm still waiting to see would there be any neurocare. My neurologist said he could reverse everything I am struggling with.

[CuriousConnie]

Iwona084 Hello, I thought your post was considered & well written. The message I took from it was you simply wish for empathy & a reminder you're not alone.

Wishing you love & light.

CCxx

[Iwona084 in reply to CuriousConnie]

Thank you so much. This is exactly what I need now! Cheers Love

[suemoff]

Iwona

I'm thinking of you and hope you do find the best way through this for you. You mentioned that you were told the neuropsychologist would only be short term in the uk. Maybe different hospitals are different, but after initially taking 9 months to see one, I still see him, at the moment every 3 months, but when I was struggling last year and saw him monthly again for a while. That's at Royal Preston Hospital. I wonder if you get referred it might be the same.

Xxxxx Sue

[Iwona084 in reply to suemoff]

Thank you! I will ask my go as i am going to walton neurological centre.