First post - ME

[Shakin]

Hi, this is my first time posting on beyond blue and hoping to connect with other ME people. I've been struggling with debilitating fatigue and pain to name a few major symptoms for the last 3.5 yrs. I had already wound down my excercise regime to accomodate for a lack of energy and after moving house back in 2014 I decided to go to a part time job as I was having to take uncharacteristic days off for sick leave and my Manager was riding me hard for taking days off so I got a part time job with nice people and all seemed fine. Just after I'd started my new job my Father got stage IV bowel cancer and was told he only had a few months to live so with my new part time job I was able to support and see him a lot which was great. On the home front though I was starting to struggle physically and with 2 young kids it was getting harder and harder and meanwhile my Fathers cancer came back after a round of chemo but he has beaten it 2 more times now with surgery and chemo therapy.

About 3 yrs ago I just couldn't make it to work anymore and had to quit. I felt embarrassed to tell people about my condition so I didn't really talk about it and tried to appear normal.

Unfortunately about this time last year my young daughter was diagnosed with a brain tumour and it was big so had to be operated on quickly, I just remember being absolutely devasted when we were told and then the dread and fear so close to the diagnosis of her operation was all encompassing and overwhelming. She survived the op but not without consequences and is still getting regular big doses of chemo as its was a rare and aggressive type of tumour that was removed. The hospital visits are horrendous as I struggled with my energy before all of this but now a lot of the weight falls onto my wife's shoulders for the major care of her as it doesn't take long before I'm on the couch or can't get out of bed due to the pain and fatigue. I hate myself for this and try my hardest to be there for my daughter every moment as this time is so prescious. This is the first time I've really spoken about my situation, as its just been to painful and I've isolated myself from friends and family as I haven't been able to face people and talk about it about my daughter or my health. I have an excellent Dr that has been there for me but that's only every few months when I'm able to go see home and try some sort of new protocol to treat my pain and fatigue with only little results. I am trying to be positive.

Shakin

[geoff]

Hello Shakin, a difficult thread for you to start but my heart goes out to not only you but your daughter as well as your Father, an unbelievable amount of pressure instilled upon you, now and in the future.

As you have an excellent doctor is the support you need as there will be many questions you will want to ask on a continual basis, and unfortunately, that's to be expected.

Can I please suggest that ask the doctor about the 'mental health plan', this entitles you to 10 Medicare paid sessions with either a psychologist or a psychiatrist, someone who is warm and gentle but experienced, because you need to be strong and when this happens, it will be better for you to show compassion, and please I don't mean anything to upset you by saying that.

Your daughter is able to contact Kids Helpline 1800 55 1800 by phone or online because she maybe changing, and I can say this because of my own head injury.

Would love to hear back from you.

Geoff.

[Shakin]

Hi Geoff, thanks for your reply and thoughts. There's so much gone on I couldn't fit everything in one post but have a good Phsycologist also so thanks for that. Unfortunately we are doing everything were supposed too but at the end of the day there is nothing we can do and that's the hard thing to come to terms with. We just found out my daughters main line for medical and chemo administration has an infection so instead of coming home today after 9 days in isolation she has to have an operation tomorrow to remove it and then stay a few more days for antibiotics and recovery and then who knows. Very frustrating.

Shakin

[Shakin]

Hi Geoff, I'm sorry to hear about your head injuries I know what you mean I have seen my daughter change after her radiation treatment as must of affected her memory and she has trouble with her schoolwork now. Thanks also for the hotline contact, my daughter is probably still too young for that but my son is a bit older and showed some interest.

Thanks again Shakin