Helpful tips to get through.: Hi, ive... - Endometriosis UK

Endometriosis UK

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Helpful tips to get through.

Elenna profile image
7 Replies

Hi, ive recently joined this group. im having trouble trying to deal with this disease, it makes me feel so horrible and effects me mentally most days. I struggle to get myself out of moods, I'm not depressed I'm just looking to see if someone else has felt like this and how do you cope with this disease? It seems like no one understands and make s me feel like in over reacting.

thankyou in advance.

Elenna

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Elenna profile image
Elenna
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7 Replies
Croydebay profile image
Croydebay

Hi Elenna

I totally sympathise with you as I am going through exactly the same feelings at the moment and feel that since I have been diagnosed (dec 13) I have really been emotionally struggling with it. There isn't a day that goes past where this evil disease isn't attacking me physically and emotionally it is so draining. I don't know what the answer is I really wish I did but like you I have found this website very useful. I'm sure this must be perfectly normal to feel like this. I feel that it is totally taking over my life and is affecting my relationship with my husband it's so sad as intake my moods out on him. I know it's wrong but you always take it out on the ones you love. I would massively appreciate any advice too. Hope you feel better soon x x x

Croydebay profile image
Croydebay

Also I don't want to go down the depression route as I don't feel it is depression I feel it's lowness from having the awful chronic disease and there is not enough knowledge and support available. I think if it goes on it could potentially turn into depression x

LadyBugg profile image
LadyBugg

I know exactly how you feel which is why I am on this website right now. I feel lonely, demoralised, embarrassed and anxious. What makes me feel worse is that i feel like i let people down, particularly at work and you should never feel like that when you work really hard. I reckon I work harder than most at my previous work place, but the one thing which let me down was endo! People never take me seriously, I have even been told by one employer than I am making it up. He could not understand how I could be so poorly and laid on the floor shaking one minute, and an hour later after my meds started to work I was able to get up again. It does affect your mentality, and you are'nt necessarily depressed (I am not, I have been in the past, but am not now). Its okay to feel the way you feel, and it makes me feel better than i'm now meeting people who have the same thing and feel the same way. You are not alone :) I just wish I could make those people realise how horrible, or ignorant they are being if they only realised that endometriosis is actually a real disease.

How do I cope? Its tough. Very tough. I used to go running, this helped my periods (a little but not a lot), but since being at uni i've not got any time for running. I just plod on. I quit my job, which takes some of the stress away, but of course most of us need a job - including me very soon! Its daunting isnt it. I wish I knew a few more tricks for coping, and I wish there were more support in the work pace which allows workers to just take it steady at the time of the month.

The only thing I can offer is a good natter! Keep strong! xx

Sofaargh profile image
Sofaargh

Find something to occupy your brain whist being still.

I've recently been going through A really bad flare up, in and out of hospital last week.

Honestly I love crafts where you can totally immerse yourself and forget everything else for hours. While I've been signed off work (again, joys) I've built a nest out of cushions and blankets on the sofa and knitted!

Seriously, last week I knitted a baby cardie for a friend and now I've started a jumper for me :)

It really helps me cope because I can just slip into my own world and I'm resting and busy and the same time.

I hope you all feel better soon, get distracting those stupid brains so your bodies can rest xxx

Hi Elenna,

I completely sympathise with you. I've been diagnosed with endo now for about 18 months. I know exactly how you feel as when I have pain, I can feel really down. It's worse when I'm at work I can't think about anything else and I just want to leave and go home. I do feel like no matter how much someone wants to understand, they can't. Most people think it's just period pains and can't be that bad. That is the problem with having an invisible illness, one that people can't physically see, the only people that truly understand are those who have it. I feel sorry for my bf sometimes as I can get snappy with him for no reason but luckily he's really understanding. Here if you ever need a natter xx

Elenna profile image
Elenna

Thankyou to everyone for taking the time to respond. I realise that looking for that magical remedy that lifts tour mood isn't that easy and instead we should embrace that we will have the good days with the bad. I think that everyone does amazing with this disease. It doesn't just effect us physically but also mentally.

this group is brilliant because it helps to speak to others about it. I'm here if anyone needs a chat too! We'll be helping each other and from what ive learnt since having this is it helps to have a moan, I'm happy to listen.

thankyou again to everyone.

xx

Pesto profile image
Pesto

Sofaargh I knit too :-) it is brilliant. I'm recovering from my 3rd lap and its the only thing where I still actually feel productive and absorbed!

I think the other thing that helps me through is feeling in control. Having some more pain relief options to hand, having a plan, some goals really helps. When I feel like I don't know what to do next I freak out and my pain is worse (or probably just harder to cope with). When I get low, I make a plan. Either about hounding my GP or what I'm going to discuss with consultant or about managing pain (talk to colleagues, take a hot water bottle, try some new stick on heat patches) or about how I'm going to pace myself so I can still do things I love but slower .... Like planning a visit to a friend with my boyfriend in tow so he can do the driving, or having friends over to knit with rather than going out to do it. I always feel better and then my mood and pain are better when I've got something to aim for.

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