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968908 tn?1274874715

Going crazy... dont know what to do anymore

Life just keeps getting worse and worse with no let up and im soooo extremely exhausted that som days i can barely get out of bed.  

My daughters condtion has got worse, on wednesday we were told that her tumour growing off a nerve from her spine is growing into the spine and heading for the spinal cord.  it is already invading her lung and close to the aorta.  We are all so angry that she has been left for the last 4 months, just keep being shipped from one hospital to the next.  We dont know what will happen if they leave it much longer, well actually i do but i dont wana think of such a horrible thing happening to my baby.  The cardio- thorassic surgeon has just now referred her to see a spinal surgeon at yet another hospital.... I dont know why they cant admit her and make a plan while she's in hospital and get it done sooner rather than later.  



Ive spoken to a lawyer who says she cant do anything.  Ive endlessly phoned the hospitals involved trying to push them to hurry the treatment and i think they are just starting to listen but its so mentally exhausting...... Her father (who doesnt live with us and has a family of his own) is thinking of pulling out of taking her to the appointments due to as he puts it ' I have to be faithful to his family'... i mean WTFH!! she is his daughter too the bar*tard.  I am so extremely worried as he is the only link between her getting to the hospitals for appointments and surgery.... Im severely housebound agoraphobic with several physcial illnesses going on which makes the agorapobia far worse.  Just dont have the energy to walk some days.... have 'ME' of all illnesses to have! The one that totally robs you of all energy and leaves your muscles sore and in pain.   I now have to walk some days with a cain as im so weak and my daughters are having to increasingly do more around the house for me... Its just a nightmare!!!!

Ive spoken to social services, as i literally have no functioning family, its me and the girls really and if her dad pulls out i may have to do something that will break my heart into a thousand pieces... To save ashley from spending a life time in a wheel chair i may have to put them into foster care so the foster family can take over the care of getting my daughter to hospital and actually being wioth her when she has surgery etc..... I went to socail services several months ago to help me and they couldnt provide a support worker or even social worker to help take her hospital.... its ridiculous!! im actually classed now as disabled and on disabilty.... Im in pain and discomfort for most of the day and so is my daughter.... its hard on her as she has a huge weight on her shoulders from both this illness as she thinks she's gonna end up in a wheelchair or have a massive heart attack, her so called blinking father...if you can actually call him that, doesnt love her.. can u imagine what that must be like for her to know. She has exams this year which her grades have fallen the last year because of this illness and shes leaving school and going into the big wide world of work and further education etc at the end of march..... she is breaking under the pressure....  Im trying to get her into counselling but there is a massive waiting list of 6months long....


It just seems like all im doing is fighting.  I wake up in the morning and i fight to compose myself, muster up both the energy and courage to face the day.  I fight to even put a foot outside the house.  i fight to cook and clean somedays and most of all im fighting to save my daughter........ ive been fighting to leave the area that we live in due to its full of crime and criminals, drugs stabbings and shootings, rioting.  U look at someone the wrong way or even the right way and they'll stab ya.  Just as im writing this an air ambulance (helicopter) has landed cause some guy has been beatern half to death just at the end of my road.....neighbours just told me.  that is another reason as to why i dont go out, i try to walk down the street and when a gang of hoodies walk around the corner i actually feel my body go into some spastic meltdown and i freeze with total fear.....

Anyway, its a complete mess.  ive completely turned to God and the angels for guidance and help and i am finding comfort there but this reality is too harsh and all i want, all we all want is peace and for the love of goodness i cant find it.  It feels like ive got the devil on my back pushing my soul into hell.
3 Responses
377493 tn?1356505749
Hi there.  I came across this post and although not a regular in this forum, I couldn't help but see if I can't offer some support.

I know you are doing all you can to treat your illness, and I commend you for that.  I cannot imagine that dealing with an illness such as yours, combined with single motherhood and extreme worry for your daughter can be easy.  It sounds like you are a much stronger person then you give yourself credit for.

I am in Canada, and I know our medical system is quite similar to yours.  So, you do not have the worry about paying for your daughters surgeries, etc. correct?  Thank God for that.  It sounds to me like the biggest challenge right now is in getting her to her very important appointments and medical visits, and with her father threatening to not help anymore, that will leave you in a very bad spot.  Am I reading that correctly?

If social services cannot assist in getting her there, may I suggest contacting some of the local charities and organizations?  Most of them have what's referred to as Outreach, and can often assist with transportation for those that cannot take care of it themselves.  They can also often provide both emotional, and if necessary, financial support.  I work for one of them here in Canada and we are often able to help out where social services leave off.  

As for the counseling.  I have anxiety, and I know what it is like to wait to get into a therapist.  However, your GP can prescribe medication, and perhaps is knowledgable to begin by prescribing something that may help in the meantime. And once again, you may find some of the local charitable organizations can help.  The one I work for has therapists, medical staff, etc. and work with many families and people in your situation. I did that, and am now in therapy, so am working through my anxiety from both sides.  Once you are feeling a bit better, it is amazing how much clearer solutions can become.  But trying to deal with all of this at once must be totally overwhelming.

Again, I am in Canada, so I know our medical system is not exactly the same, but I do believe it is similar.  I hope maybe even one of my comments is helpful, and will also keep you and your family in my thoughts and prayers.  I wish all of you well.  Take care.
377493 tn?1356505749
I just had one other thought for you.  Here, we can go into Urgent Care or the Emergency Room for mental health crisis as well.  I believe that you can as well.  That might be an option for you?  It just sounds like you are in crisis and they are a great resource. Again, best of luck to you.
968908 tn?1274874715
Hiya adgal, thank-you so much for replying.  yes you got most of that right. Plus you have been of great help cause even though i have searched to get help it has all been through the council and i didnt extend my search to local charities, i totally missed that boat so thank-you, i will have a look and see if anything comes up.  I'll phone the Samaritians and Salvation Army for one to see if they have any numbers and the disability helpline too.  Im sure there are far more.

Thank-you so much for taking the time to give me a great idea, i now have a little glimspe of hope again that there must be someone out there to help....... God bless you!

Peace n light

Julie
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