feeling hopeless

lymphatic fault, carpal tunnel, Sesamoiditis, Tendonitis in Foot, hot tubs, spas, jacuzzi, mattress toppers, cold weather, daily lymphedema management, Bandage Wrapping, Wrapping and Rolling

Moderators: Birdwatcher, jenjay, Cassie, patoco, Senior Moderators

feeling hopeless

Postby butterfly » Mon Oct 09, 2006 8:33 am

Hello-i'ts me again. I feel pretty hopeless just now. Now been signed off for a third week. Went to see lovely LE nurse on friady-advised me to take this week off too. Wondering what is going to happen with my job. I am on their sickness management programme and I don't know how far away I am from being medically retired. I have been told by my learning difficulties support worker I could ask to be medically retired if and when I feel I have had enough. It's just I feel so upset-my family are very caring tkaing me to appointments etc but find it difficult to understand. I feel if I gave up my job they wouldbe so upset. They keep saying they want to fix my le for me. Don't know what I'd do if I gave up my job on medical gvrounds /or medically retired. I know many of you have alot going on at home even if you don't work kids etc, but I live and home and want my independance but know I am reliant on others due to my dypraxia etc now I am even more of a burden for my parents with my le.
I don't want to push myself into the ground doing this job-but I don't know what I would do at home ot what sort of other job I could get beacuse of my learning problems. I feel I am trapped in a body that does not work. When I was little I wanted to do so many things but just as things seem to go well god seems to give me yet another burden. Also my elderly grandmother used to live with , and sort of felt I had a bit of company and someone who couldn't do much but try to enjoy life despite her limitations and always had a cuddle for me and my dwarf rabbit at the time. Now I am left at home at age 27, with parents who probably thought I would have moved out by know had It not been for my disabilities and now my le. I have a lovely sister who I go on holiday with but she undersytandblty and quite rightly has her own life to get on with and enjoy. I just feel my parents are in constant mourning for all I can't do-maybe I am a little to-but there seems to be no solution for me. I want so much be happy but sometimes it seems like an uphill struggle, full of pain, fatigue and barriers.
Sorry If I post too much and moan too much.

Postby silkie » Mon Oct 09, 2006 2:15 pm

Hi Butterfly

Lifes a pain your not kidding
giving up work knocked me for six too
then i got mad. Got mad at lymph, doctors that didnt know what i had had
Got angry that now they did there was nothing but wrapping and mld
Got even madder at my family that tried to be kind and helpful which made me feel even worse cos i was useually independant and i wanted to yell at everyone.

I did the crying, the its not fare, the WHY ME


lymph had changed my life -------Enough is enough
My life might be changed but lymph wasnt going to be my life butterfly

i was going to have a life it might be different but i was not going to live
for the lymph i was going to live for me

Its not easy hun its hard and days when you you cant help but let it get to you


As a parent i never had children for 18 years or 20 years I am a mom for life when im 90 ill still be a mom and my kids will always have a mum dont think your a burden to you mom and dad they love you

we dont understand lymph and we have it so its a little harder for them
dont feel guilty because tthey want to cherish you darling As a mom
it the one thing i miss taking care of my family there all grown now

and i miss being a full time mom .

Work I dont work out of nessessity but i do do a lot here on the pc
i paint, takes me forever to do only part of what i used to do but i still do it slowly

I have a friend she makes personalised greeting cards at home
i sell the odd painting mostly to pay for more paints and equiptment but i love it
I have made hanging baskets. nail pictures even packed kids toys
but dont expect to make a decent living from it its just something to do

i love searching the net for information from lymph info
to finding info for a friend shes a teacher and i go finding sites for her to help with projects at school

i know this isnt much help right now but there is more than work out there
and if your medically retired think of it as an opportunity to
do something you have always wanted to but never thought you would

i am so glad you vented butterfly so many feel like you and dont speak out
I think today many have read your posting and thought hey I am not the only one

try and think of this a semesta and your thinking of your options for the next step in your life take a little time think of all your possibilities
what you like to do and reseach what you need to do and where you can get help from

i found eventually that far from it being the worse time in my life giving up work I found a whole new side of me i had supressed because i never had the time

if your feelin low or want to talk butterfly im on msn just give me a shout we can get together there anytime


Silks xxxxxxxxxxxxxxxxxxxxxx

things will change but i think you will find you can handle the change and maybe thrive on the challenge
User avatar
Posts: 383
Joined: Fri Jun 09, 2006 4:43 pm
Location: England

Postby gottahavesun » Mon Oct 09, 2006 4:54 pm

Hey Butterfly,
I second what Silks said. I had a hard time giving up work and struggled with my decision for a long time before I think my body made my choice for me-I felt drained, even trying to do my job part-time. It has been a little over a year since I stopped working and I'm really okay about it now, wasn't at first, I had to grieve the lost of my job and what made me feel useful and important.

I do as much as I can for my family and they pick up the rest. Just because I have a husband and a son at home doesn't make it different then your situation. In fact my parents don't live with me and we have talked many times about them wanting to make my LE better so I don't have so much pain and struggles. As a parent myself, I like Silks feel that I'll be a parent to my child forever, even if it means taking care of them as an adult. You are going thru so much right now Butterfly, please don't worry about being a burden on your parents.

The unknown is a scary place sometimes. If you are not sure what medical retirement would mean, go ahead and ask now, before it gets to the point that you are getting it. The more you know about the future, the more you can break everything down and get thru them.

Hugs to you!

As a part
Posts: 56
Joined: Tue Jun 20, 2006 9:10 am

Postby bouncedrealitycheck » Mon Oct 09, 2006 10:32 pm

Hey Butterfly! I just wanted to let you know that I understand what you're saying. I am newly diagnosed-less than 2 years-and it was very hard on me at first. I got mad, and I stayed mad for a long time. I was mad at people asking if my legs were better, and if one more person would have said "YOU"RE SICK AGAIN??", I'm betting I would have blacked an eye. I had to move in with my elderly father, who is 78. He, like your parents, wants so much to make it all better for me. I love him so much for that. And I'm grateful that I got to look at my dad as not JUST my dad, but a completely different person that I never took the time to see before. He may make me roll my eyes and shake my head in disbelief sometimes, but then I think about how I would feel if I didn't have him around. And being off of work is hard to deal with. I was a workaholic, working 2 jobs and worried about keeping up with the Jones'. When I had to quit, I was lost. Work was who I thought I was. Then, I decided if I was going to have to be at home, I was going to do all those things I had wanted to do before and never took the time. I read all my favorite books again, I took up jewlery making and have made my own beads with clay. I tried painting and I'm a much better looker than painter--haha. I know it's hard on you, but what they have said is right. Find something that makes you happy, and do it. Don't give up! I keep a journal and write like a crazy woman sometimes, but getting it out helps. It took me getting really, really angry before I could get happy again. Vent, get it out. We're listening, and right beside you, girl!
Posts: 13
Joined: Fri Jun 09, 2006 1:55 pm
Location: Missouri

Postby h_festa » Tue Oct 10, 2006 9:26 am

Boy oh boy do I know what you're talking about! My last time in the hospital when I had issues with my lyphedema and got diagnosed with MRSA was the last straw. I was so angry, and I vented in a blog that I keep. Explitives and everything! My friend gave me some very sound advice "chin up." I remember that everytime my lyphedema gets me down and I'm in pain. Writing down your feelings helps a lot. I also have a few very close friends who have been there through all of the infections and recovery.
I too had been out of work for weeks at a time. I have left my full time job recently after over 6 years and now work part time.
From what I see on the site, we all understand what you're going through! I'm hanging on for you (as well as all of us!) :)

Posts: 6
Joined: Sun Oct 08, 2006 2:27 pm
Location: Uncasville, CT

Postby butterfly » Tue Oct 10, 2006 10:46 am

thankyou you all soooo much for your support and thoughts. Much apprecaited.

Postby silkie » Wed Oct 11, 2006 3:27 am

Hiya Butterfly

hope today your feeling a little better


User avatar
Posts: 383
Joined: Fri Jun 09, 2006 4:43 pm
Location: England

Return to Our Daily Lives with Lymphedema

Who is online

Users browsing this forum: No registered users and 5 guests