I saw this post on another endometriosis blog. Since none of us are the same and we have all had very different experiences, I thought I'd give it a whirl and complete it too. I would love it if you could answer in comments to show how different the affects can be.
1. The illness I live with is:
Endometriosis. You can read more about it on the tab Endo: all you need to know
2. I was diagnosed with it in the year:
2011 after many years of problems
3. But had symptoms since:
1995 - when my periods first started. They were always very heavy and painful but I thought this was normal.
4. The biggest adjustment I've had to make is:
Realising endometriosis controls my life
5. Most people assume:
That endometriosis is just a bad period. Even when I've fully explained it to people they just do not understand it. I think only those that suffer too will ever fully understand. Calling in sick to work is always the worst thing.
6. The hardest part about mornings are:
Waking up tired and in pain after waking continuously through the night. It can be a real struggle to get myself up. The anaemia doesn't help the tiredness either.
7. My favourite medical TV show is:
I don't really watch medical TV shows
8. A gadget I couldn't live without is:
My phone and ipad. Don't know what I'd do without being able to play games when I can't sleep or read on my kindle.
9. The hardest part about nights are:
Trying to get to sleep. Wondering how many times I'm going to wake in pain or how much sleep I will manage to get before work
10. Each day I take 26 pills and vitamins:
26 is my usual day. It includes Tramadol, Mefanamic Acid and Paracetamol. I also take Iron and B12. On the days where the pain is too much for me, I also take tranexamic acid.
11. Regarding alternative treatment I:
Haven't tried it but would love to hear any suggestions
12. If I had to choose between an invisible or visible illness I would choose:
This is hard to answer. Having an invisible disease means it's hard for people to understand but then I do have days where doing my hair and makeup can really lift my mood.
13. Regarding working and career:
I do currently work but will admit it becoming harder and harder to drag myself there. The time off can cause me problems but thankfully I have not yet lost my job.
14. People would be surprised to know:
How much endometriosis affects your entire life. It affects your body, your work, your relationships, your friendships, your mobility, your independence, your self confidence... Everything. It is my entire life. From when I wake up, to going to the toilet, to getting ready, doing daily chores, getting around, to trying to sleep at night. It's always there, and that's very hard to deal with.
15. The hardest thing I've had to accept about my new reality has been:
That I may not be able to have children. I know there are alternatives but I would love to have my own children
16. Something I never thought I could do with my illness that I did was:
Write this blog. I used to be embarrassed about my illness but now I know there are too many suffering and not enough awareness so that's my aim to increase awareness and share my experience
17. The commercials about endo
I haven't seen any but there should be!
18. Something I really miss doing since I was diagnosed:
My social life. It's hard to plan nights out with friends when I have no idea how I'm going to feel
19. It was really hard to have to give up:
I haven't really given anything up although I no longer drink alcohol unless it's a very special occasion. That wasn't hard tho and I sure dont miss the hangovers!
20. A new hobby I have taken up since my diagnosis is:
I started making jewellery using glass beads. It's something I can focus on when I'm in pain.
21. If I could have one day of feeling normal I would:
Stay up all day doing things I can no longer do on a regular basis like go swimming and out for dinner with friends go dancing!
22. My illness has taught me:
Alot more needs to be done to improve awareness of endometriosis. It also taught me how people can change when you're no longer a social butterfly
23. Want to know a secret? One thing that gets under my skin is:
People's attitudes towards my illness. The whole it's just a bad period idea.
24. But I love it when people say:
How are you doing? Shows some people do care whether they fully understand or not it's nice
25. My favourite motto, scripture, quote that gets me through the tough times is:
Learn from yesterday, live for today, hope for tomorrow
26. When someone is diagnosed I'd like to tell them:
You're not alone! There's a lot of us around just get yourself online
27. Something that has surprised me about living with illness is:
How much it has changed my life. It's shocking how much pain this can cause
28. The nicest thing someone did for me when I wasn't feeling well was:
Talked to me all through the night when I'm in pain and can't sleep
29. I'm involved in Endometriosis awareness month because:
Endometriosis needs awareness! Not enough people know what this disease is or how it can affect someones life. Women need to know what to look out for and to know that being in ridiculous pain from a period isn't normal.
30. The fact that you are reading this :
Gives me hope that awareness is increasing!
30. The fact that you read this makes me feel:
Like I'm doing something useful
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