Just One of Many: Difficult decisions with Invisible Illness

This year’s theme for Invisible Illness Awareness Week is “Just One”.

My whole life I have suffered from invisible illnesses. From a very early age I suffered from asthma and allergies. Because I grew up with them I know how to manage them reasonably well (although I’m still identifying and learning to manage new allergies all the time). The newer conditions (Fibromyalgia, ME/CFS and Pelvic Congestion Syndrome) I’m still learning how to manage and live with.

I feel like since I have been living with these conditions my whole life has been turned upside down. Many things have been put on hold or given up. I haven’t worked in over a year, I struggle with social events and I only just manage to stay positive with the limited level of activity I’m capable of.

Lately, I’ve been struggling more than usual with staying positive. I honestly don’t mind that my ability to do many of the things I love has been limited. I don’t really mind too much that I haven’t been able to work for so long and that I haven’t been able to go on the holidays I dream of.

There is JUST ONE thing that I really struggle with and I think it is something many women in my position are likely to be struggling with as well.

Many of my family and friends are either pregnant or have young children in their families. Although I am extremely happy and excited for them, it also makes me sad. Before the new conditions hit, I had believed that by now I would be a mother, or at least we would be trying for children.

Now my life is filled with so much uncertainty. Although I’m told that my conditions do not affect my fertility, many of the drugs I’m on at the moment can OR can affect the development of a baby. I’m not sure my body can cope with pregnancy or with looking after a young child. My bone density is low which means I have a higher risk of stress fractures and very weak bones. My pain is going to increase during pregnancy due to the pelvic congestion and all my other conditions have a 33.33% chance of getting worse as well based on what information I’ve been able to find.

Despite all of these issues, having a family of my own is the number one most important thing to me. Ever since I was a child (possibly even as young as 4 when my sister was born) I have wanted to be a mum.

If I had to choose JUST ONE activity I would like to achieve in my life it would be to have a child of my own.

I have a difficult decision to make and I feel we need to make it soon. To try for a biological child of our own or to adopt. There are treatment options available for some of my issues which I have been told we can’t consider until we’ve finished trying for children.

Whichever choice we make, I know that any child we bring into our family will be loved and cared for. I may not have the energy or strength to be a ‘normal’ active parent, but I will be the best mother I can be. We have a wide network of family and friends who I know would do whatever they could to help us as well.

What is your JUST ONE story?

Are there others out there who are struggling with decisions related to starting a family with multiple chronic illnesses?

30 Things About My Invisible Illness You May Not Know

Next week (8 – 14 September 2014) is Invisible Illness Awareness Week. I will share my ‘Just One‘ story with you next week. Today I’m completing the 30 Things Meme.

1. The illness I live with is: Pelvic Congestion Syndrome, Fibromyalgia, ME/CFS, plus several other conditions (asthma, osteopenia, allergies, etc)
2. I was diagnosed with it in the year: 2013 (asthma and allergies since early childhood)
3. But I had symptoms since: my whole life
4. The biggest adjustment I’ve had to make is: redefining what success means to me and what I can realistically achieve in any set time period.
5. Most people assume: That pain and fatigue is ‘normal’ and that it is manageable.
6. The hardest part about mornings are: Getting Started…
7. My favorite medical TV show is: This varies a lot but at the moment, One Born Every Minute
8. A gadget I couldn’t live without is: My food processor… it makes making meals easier
9. The hardest part about nights are: The pain
10. Each day I take 6 pills & vitamins. (No comments, please) – this is likely to go up again soon thanks to the low bone density.
11. Regarding alternative treatments I: consider all options and try out anything that seems reasonable
12. If I had to choose between an invisible illness or visible I would choose: This is difficult, but I think I’d say stick with what I know…
13. Regarding working and career: I don’t know what is happening anymore… everything’s been on hold for well over a year now and I haven’t really made much improvement recently.
14. People would be surprised to know:  I’m not depressed! I’ve managed to keep a positive frame of mind the majority of the time.
15. The hardest thing to accept about my new reality has been: The uncertainty. 
16. Something I never thought I could do with my illness that I did was: Raise $,7500 to publish the Foggy Frog picture book (still in progress).
17. The commercials about my illness: I haven’t seen any for the main ones.
18. Something I really miss doing since I was diagnosed is: Walks/Hikes with my husband.
19. It was really hard to have to give up: Control. I never know what I’m going to be like and I can’t do everything I’d like to any more. My ‘ideal’ timelines for things like starting a family and major holidays have all gone out the window.
20. A new hobby I have taken up since my diagnosis is: Blogging and sewing
21. If I could have one day of feeling normal again I would: Go on a hike with my husband and have a lovely dinner out.
22. My illness has taught me: To listen to my body and be more assertive with what I need/want.
23. Want to know a secret? One thing people say that gets under my skin is: Everyone gets tired/sore
24. But I love it when people: Visit me at home for games/a meal.
25. My favorite motto, scripture, quote that gets me through tough times is:

26. When someone is diagnosed I’d like to tell them: Listen to your body and do what is best for you. 
27. Something that has surprised me about living with an illness is: I’m able to cope with much more pain and exhaustion than I thought was physically possible.
28. The nicest thing someone did for me when I wasn’t feeling well was: Make me breakfast in bed and gave me permission to just rest.
29. I’m involved with Invisible Illness Week because: I feel it is important to raise awareness of what people actually go through. These illnesses aren’t really well understood in the general public and this is an important first step in creating a more understanding community.
30. The fact that you read this list makes me feel: Grateful. You have taken the time to try and understand a bit better what it is I go through on a day to day basis.