Attention fellow spoonies! We are seeking your thoughts, ideas, advice, coping techniques, and wisdom!
We all know that chronic illness and pain (invisible or otherwise) can and will steal endless things from our lives.
Sometimes it can teach us a few positive things as well, such as a different outlook on life, the ability to appreciate the small things, a greater sense of compassion, more empathy for others, a desire to advocate for our ourselves and others, learning to listen to your body, better eating habits, patience, etc. but what chronic illness takes from us often feels like so much more (because the reality for most of us is that it takes WAY more than it gives).
As I have mentioned before, one of the most difficult and heart-wrenching things that it has taken from my life is the ability to look forward to something; ANYTHING! This seems to be a recurring theme and problem that I continue to struggle with.
I LOVE, LOVE, LOVE to travel. I always have.
I haven’t always had the money or made the tough decision to scrimp and save throughout the year for a vacation, but about 9 years ago I started doing it and as a result, my husband and I enjoyed some of the best times of our lives on various vacations with my parents, and even short road trips with friends, mostly between the years 2006-2012.
The second half of 2012 was when things REALLY changed for us. I had my second laparoscopy to remove Endometriosis and adhesions in January and I was doing pretty well after that for several months. We even went on a cruise to Belize, Honduras, and Cozumel only one month post-op from that surgery!
Looking back now, I’m sure I was still probably a little weak, sore, and tired but all of that paled in comparison to the joy that the trip brought and any ill feelings that might’ve crept in during the week were FAR out-weighed by endorphins from having SO MUCH FUN! In fact, I can’t think of a better way to spend the post-surgery recovery and healing phase, as long as you don’t over-do it.
However, as quickly as my temporary relief came from surgery, I started to develop my facial pain syndrome, which (as many of you already know) has caused 24/7 chronic pain ever since. Approximately one year later, my Endometriosis symptoms started returning and they have gotten progressively worse ever since, now causing chronic (rather than intermittent) pain on a regular basis, in addition to my facial pain.
In July 2012, my husband Billy was involved in the car accident that would mark the beginning of his chronic pain journey, leading to a subsequent anterior cervical fusion surgery in December 2012. That was the real tipping point for us and since then our lives have never been the same. He never recovered from surgery and has been in 24/7, severe, intractable chronic pain ever since.
My pain seems to be better managed than his, at this point in time. It certainly isn’t because I am on stronger medication. Perhaps his pain is worse. He certainly believes that it is and I tend to think so too, quite a bit of the time. I mean, it is his SPINE afterall and having plates, screws, bone spurs, and nerve damage surely causes unimaginable pain. I know it does for him because I witness it every single day and it breaks my heart. There may be times when the severity of my pain surpasses his, but those moments come and go and it really doesn’t matter whose pain is worse. The fact the we BOTH have to deal with severe chronic illness and/or pain is a burden that many cannot imagine, unless they have experienced it. I know that many of you HAVE experienced it and can relate.
I try very hard not to compare pain levels because pain is such a subjective thing. Maybe my body just responds better to my medications or I’m on a combination that works better for my metabolism. There is no way to know for sure. The only thing I do know is that he can no longer do ANY of the things we used to enjoy. His ability to drive or ride in the car is so limited that travel of any kind (except the 10-15 minute drive to our pain management doctor) is impossible. How we are going to make it to seek a 3rd and 4th opinion from out-of-state spine surgeons is beyond me. Our doctor isn’t willing to make any medication adjustments, even just for one day, in order for him to endure the travel necessary to see the specialists that she has recommended for him. I don’t understand why. He isn’t asking for much and he just wants to get better. Is that too much to ask?
My pain and fatigue are horrendous as well (as everyone who regularly reads my blog already knows). However, the difference lies in the fact that I do still manage to work and perform some of the normal ADL(s) that life requires. Despite my debilitating symptoms, I have learned to push through more often than not, but I do have more days than I care to admit when I am incapacitated and bed-ridden. Still, I forge ahead. I probably could manage to travel, within my current limitations, but my dear hubby could not and I don’t have the heart to take a vacation with my parents without him. It just wouldn’t be the same and he wouldn’t do that to me. Even if I did, our financial situation and endless medical bills would prevent it.
Back to my original question and reason for this post … Every time I hear someone mention planning a vacation or trying to decide where to go on next year’s holiday, my heart breaks just a little bit more. Even when my good friend (and boss) takes off for a long weekend get-a-way in a small city a couple of hours from here, it makes me sad because we used to be able to do things like that too and I MISS it like crazy. I should be happy for those who are able to enjoy life in that way and I am happy for them, but I must admit that I’m also jealous.
I want to travel and make more precious memories with my parents, while they (and we) still can. They won’t be around forever (unless my prayers are answered or the secret to immortality is discovered in the next decade or two) and I want more than anything to spend another week floating at sea, relaxing on a cruise ship, gazing upon the beautiful scenery, and exploring exotic destinations with them. I know that not everyone has EVER had even one opportunity to do something like that, so I do not take for granted that I WAS able to have those experiences in the past. I guess the problem lies in having tasted something so sweet and wanting to have more. That was our plan.
I just don’t want to miss out on this precious time that I should be enjoying with my family. I should have a family with children of my own by now and my parents should be enjoying grand-children. If I have to accept my infertility (along with the inability to adopt right now) and the loss of those dreams, I at least don’t want to accept a life ruled by chronic pain, fatigue, illness, and medical debt. No one does. It’s not fair for any of us. Regardless, it isn’t likely to change anytime soon.
How can I get past this feeling? I know that it’s wrong to be jealous. I’ve dealt with it on various levels my whole life. The worst has been with issues surrounding others’ pregnancy due to my infertility. No matter how hard I have tried to over-come that heart-break, I just couldn’t do it. I still can’t. I finally just acknowledged the fact that I couldn’t handle it and made a conscious decision to avoid baby showers, the maternity section of clothing stores, and do my best to stay away from pregnancy related posts on social media (although the last is nearly impossible).
I can’t make a conscious decision to avoid the whole world just because it causes emotional and psychological pain to hear about other people enjoying life. I try not to let it show, outside of the occasional blog post like this one (just to get it off my chest) and I think I do a pretty good job.
How do you deal with the loss of what chronic pain or invisible illness has taken from your life?
I’ve always been a goal driven person and having something to look forward to is what used to fuel me to work hard and accomplish things in life.
How do you deal with having nothing to look forward to? I need something to motivate me to get out of bed and keep working towards.
I have many things that I am THANKFUL for but that isn’t the same as something to LOOK FORWARD TO.
I have my loving husband, my wonderful family, my precious dogs and cats, and a good friend or two, who I cherish, but I still feel a void. The void of having attainable goals to work towards. Is this a normal part of the grieving process? If so, does it ever go away? What do you look forward to? I am open to and would be grateful for any ideas on how to deal with these feelings.
Feeling this way is embarrassing to me. Even as I’m still writing this post, I already feel guilty and shallow about it. It’s just really hard to enjoy life when the best you can hope for is a pain level that is tolerable enough to allow a stress free conversation or movie on the couch with your spouse and the occasional short visit with your parents, which is only possible once or twice per month, despite the fact that they only live about 20 minutes away. 😦
For now, we are trying to keep positive attitudes, despite adversity, and work towards some goals, which (if we are lucky and our prayers are answered) may help us to help ourselves and seek some of the necessary treatments which may set one, if not both, of us on the path to recovery and a more normal life.
In the meantime, I am trying to work towards smaller goals as well, such as exercise (I will elaborate more on that later), cooking healthy meals, organizing medical records, regularly updating my blog, etc. My hope is that these baby steps will help my mental state by allowing me to achieve small goals and appreciate any tangible results. It’s not the same as having a big reward to look forward to but with chronic illness comes major life adjustments and right now, this is the best that I can do.
Thank you to anyone who has made it through this long-winded and multi-faceted post. Sometimes it helps to simply get frustrations and feelings out of my mind and onto paper (or the electronic equivalent). As always, my ADD may lead my mind in several directions at once, resulting in a plethora of thoughts and sub-topics.
As I said before, any tips or advice on how to deal with the drastic life changes, loss, or new limitations caused by chronic illness and/or pain are graciously welcomed.
💖 Wishing you all a pain free day 💖