Second session with my counsellor this morning. Went well, have me some great prompts and helped me to find some practical things I can do.
Hardest part for me is accepting this condition, saying goodbye to the old me and not allowing myself to be defined by it.
Any advice gratefully received as I don’t know where to start with this part.
Thanks.
C
Its a difficult one. I had talking therapy and needed it. I was at the very bottom and so very hurt and angry with no way of managing it all in my head. For me accepting illness was in some way the easy part, I have always been ill, progressively. What I had, still have is a great deal of anger about the way our illnesses, our lives are dealt with. The slowness, lack of care, understanding, effort, the patronising, being treated like a mushroom all the things that surround the wonders of this kind of chronic, difficult illness.
What I have accepted is that old adage :
Grant me the serenity to accept the things I cannot change,
The courage to change the things I can
and the wisdom to know the difference.
That is what therapy will do. It will order your thoughts, put sense into the nonsense, give you courage to speak out and say what you need to say and fight when you need to fight.
It will hopefully allow you to allow yourself to be angry, be sad, to grieve. Then you can allow yourself to be happy.
Then when you are all cried out and talked out, one day, mine took about 7 sessions, I went to my last session and I was not sure what I wanted to say anymore. My therapist said, you don't need me, but if you do just call and refer yourself again. You know what you have to do, now go and start doing it!
X
I am with you and all, our son has Brainstem seroious manifestation of Paranchyml Neuro Behcets, his speech dysartheria permanent, as his motor skills shaking arm permanent, eye lost 47% visual function in left eye, behind eye overnight occlusion BRVO, we have been through most difficul time with him as he becomes frustrated and it is hard to control his anger...but with time he is beginning to accept it, and I wish everybody the same, remaining calm, no matter how hurt we are, we have to handle the situation, I have to learn to control as a mother, my anxiety as well....I totally understand, how this plays part in all of our lives...good to know that we are not alone...lots of love to all...
Can I ask you how it is to care for and be so close to someone going through this. I am mindful of my children and my wife as I know this all has an effect on them too. It makes me feel such a failure.
Just wish I knew how to help them to help me if that makes sense.
Take care
C
Hello; I think the fact that you admit that you want to help them to help you is a positive beginning - show them you can take care of your nutrition - to me that is what I want my young 29 yr. son to learn - his immunity has to be strong to fight disease - take up anti-inflammatory cooking classes, learn to truly cook food that is Omega 3 Rich diet, ie. salmon, turmeric for herbs, etc... it is very hurtful situation, but you have to have space from others around you to function and be spiritual - be positive in small space rather than comparing yourself to others - you have your own journey as do others...we have been through a lot for acceptance for this dangerous face of Neuro behcets that causes severe morbidity and eventual mortality....I have come very far with this disease, I am a different mother now...
Thank you for your response.
My thoughts are with you and will certainly follow your advice.
Take care and all the best
C
...likewise, we are with you, I know your situation from practical experience, I do wonder what neuro behcets you have as there are so many types, as you know our situation is the most devastating type, menitoned in the articles, yes, with worse prognosis, the brainstem/pons lesions....what is your MRI suggesting if you wish to share...again, you are not alone....
I think it can be a long process to acceptance and you are taking the first steps which is brilliant. The psychologist from the Centre of Excellence made the analogy to the grief process and that each flare up of Behcet’s can send us around the cycle again. I will try and upload a photo of that cycle
The not being defined by it part is hard.... but everything will get easier, it really does just take time. You will have good days and bad days. Hopefully, keep trying for the good days, stay up on nutrition and rest... learn to say no and more good days will be ahead.
It really is one day at a time. On those bad days, call it a day, get in bed and you try again tomorrow.
XOXO
How The Lord of the Rings gave me some clarity to the way Behcets disease makes me feel.
Exhausted
Writing to the ME Association
To go sick or not to go sick ...that is the question ?
