Fed up... This isn't living, it's survivi... - Endometriosis UK

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Fed up... This isn't living, it's surviving...

NJG_98 profile image
16 Replies

I'm so fed up tonight, after another day of being in excruciating pain and having to work an 8 hour shift to come home to a mother who doesn't understand me and the fact that I'm not over exaggerating but genuinely in agony and exhausted from being so lethargic and fatigue.

I'm supposed to be turning 18 in 4 days, I feel like some 90 year old elderly woman who needs 10 naps a day, the pain won't leave even with hot water bottles on my lumbar spine and my pelvis.

Sometimes I just think what's the point in living anymore, whatever is wrong with me feels so degrading and debilitating. I just want to live a normal happy healthy life, is that too much to ask for?

:(

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NJG_98 profile image
NJG_98
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16 Replies
SusiePg profile image
SusiePg

Hang on in there, there is lots of support here from other ’Mums' who do understand so don't stop having a rant as you need to vent your feelings. I had a mum who didn't understand and had to come to terms that she felt helpless but instead of hugging me and just listening she pretended it was normal. Got to go to bed now but let's see if I can help you put words to how yr feeling and see if you can express that yr scared, feel life is hopeless and how isolated you feel. It took me till I was 40 before I wrote a letter to my Mum telling her just how unsupported I felt. I wish I had talked to her yes ago as she admitted she felt hopeless and thought that it was just a stage I would grow out of. Sending you hugs and please PM me if you want some help x

NJG_98 profile image
NJG_98 in reply toSusiePg

Thank you so much for your response, it means so much.

My mother literally doesn't understand at all, it's so frustrating.. I might try to write her a letter and explain to her how I am feeling and that I need more support because she's the only family and even friend that I actually have right now haha.

Thank you for all of your help, hope that you finally have the support from your own mother yourself, and thank you for your response x

Hopeful82 profile image
Hopeful82

Im so sorry to hear how you are feeling at the moment, I can relate completely unfortunately. If we get some sunshine tomorrow try and get out in it observe nature, just listen and watch and can be up lifting to feel part of the wider world. Big hugs x x

NJG_98 profile image
NJG_98 in reply toHopeful82

Thank you, sadly I was sat at work all day during the good weather and the weekend has sucked, but tried to get out as much as possible instead of moping around feeling sorry for myself

xx

nikki_85 profile image
nikki_85

Aww hun, sending hugs. I know how you feel my mum was exactly the same! Hope you get some answers soon x

NJG_98 profile image
NJG_98 in reply tonikki_85

Sorry to hear :( it really sucks when your family don't understand, I have some doctors appointments coming up really soon so hopefully get this sorted.. x

Tboag profile image
Tboag

Do hang in there hunny, our loved ones will never fully understand our pain and loneliness in this disease, and they feel annoyed at themselves that there is very little they can do,

Ask your doctor to check your iron levels, and get some vitamin C tablets, for the exhaustion.

Does your mum go with you to your appointment s , maybe that would help, also find things that you relate to on here or other sites/stories and ask her to read them ,

I'm a 40 year old lady and still find it difficult to make people understand just how crap I feel, but I do d writing it down often helps,

Good luck and keep your chin up. Xxxx

NJG_98 profile image
NJG_98 in reply toTboag

Hi, thank you for your reply.

My mum has only been to one of the appointments where my GP said she thinks it's very likely that I have endometriosis and that it could be quite advanced.

The problem was that both the doctor and even I had to try and explain what endometriosis was to my mum, so in that aspect I understand why she probably doesn't show much support or understanding to the pain I'm in or the constant exhaustion.

I take multi vitamin and iron tablets everyday, they don't seem to help much but perhaps vitamin C tablets will, I have a doctors appointment on Monday so will request a repeat blood test there.. I might ask her to research into endo so she gets a more clear understanding, even though I haven't been diagnosed yet, she'll understand my symptoms.

Thank you for your support Xxx

Thegirlabouttown profile image
Thegirlabouttown

I am not sure if I can stay the situation is the same as I lost my mum and only have my sister, but she has been so unsupportive now that I have my surgery coming up I don't even want her there

NJG_98 profile image
NJG_98 in reply toThegirlabouttown

So sorry to hear this, maybe she is finding it difficult to grieve, either way if it's just both of you then she should be supporting you. Wishing you the best with your surgery and I hope that you don't have to go through this alone, we're all here on this site for you. All the best xxx

hayleys900 profile image
hayleys900

Big hugs, I know exactly what your going through, finding it hard to cope xx

NJG_98 profile image
NJG_98 in reply tohayleys900

Hope you're okay :( sending hugs your way xxx

poppy75 profile image
poppy75

Hang in there and keep posting on here. I'm so sorry your mum doesn't understand but we do so there is support here.

I was lucky that my mum did support me so much. She supported me more than anyone. The rest of my family did not whatsoever. Unfortunately she died a few years ago and I've been left feeling like no one understands like she did. I have to constantly explain everything and still they don't get it. It's so hard to describe and people have a really crap habit of quickly googling a condition and then believe they are experts. You end up having to develop a very thick skin.

As well as posting on here could you see if there's an Endo support group in your area? There's nothing worse than not only having to cope with this pain but also feeling no one understands. If there is an Endo support group nearby I think that could make all the difference. Big hugs xx

NJG_98 profile image
NJG_98 in reply topoppy75

Thank you for your response, I'm so glad your mum was supportive for you, and I'm so sorry to hear she's no longer with you, but always remember that she is shining high above you and following you through life, she's still with you just not physically.

People irritate me when they google things then become expert doctors.. but that's the internet for you :(

I never considered a endo support group, I'm going to have a search around and see if there's anything near me, hope you're okay lovely, always here. Sending hugs xxx

poppy75 profile image
poppy75 in reply toNJG_98

Thank you for your lovely reply. My stupid phone hasn't bothered to send me notifications for 2 months so apologies for the delayed reply. Your message just made me well up! Thank you for being lovely and I really hope you're having a good non-Endo day xx

NJG_98 profile image
NJG_98 in reply topoppy75

My phone did the same, and I haven't really checked this in a while but you're so welcome, send me a message if you ever need a chat love! Hope you're doing well & having some pain free days. Xxx

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