May 22 marked six months since my RPAO and hip surgery. Everyone kept saying 6 months is the magic number where things would start to turn around. I convinced my want-to-be-naïve mind to somehow believe that despite all the odds against me, that I could possibly have a “normal” recovery time limit. LOLing at that, seriously. Nothing on me is “normal”, I’ve come out of that denial now.
Anyways, at 5 months as I was getting a little better I got impatient and I did a few things to try to “speed” up the process. ART, massage, personal training, and started trying to do more normal things like yard work. It was all a big big big mistake. I flared my hip and especially my back 4 weeks in a row to the point of absolute misery (tight burning fascial and nerve pain all through my back, legs, and both hips). I’m just now calming a little from the month of flares and physically feel like I’ve had at least a 2 month set back.
Mentally this month and the set backs have torn me up so hard inside. It was my fault for messing with “the plan” so I had a tremendous amount of guilt about my decisions and about hitting the magic number of 6 months and still being so limited in doing pretty much anything. I’ve been feeling quite useless to be honest, like my purpose is not one of much these days (or I should say years). I am not wired to sit and lay around. I’m wired to get up and go and move and help and serve others and have a job and be productive and to be active. It’s been 4+ years since this started, 3.5 since being pretty limited in what I can do, and 2.5 since being in bad pain with the activity limitations. Sometimes it just gets to me and I fall apart. Last week I can honestly say I fell apart, like apart in a way I haven’t done in probably over a year. Somehow I held it together during the days, but when night fell and everyone was in bed-the pain, the guilt, the feelings of helplessness came crashing over me.
During my major meltdown my husband spoke truth into me. I knew he was right in the things he was telling me, but sometimes I just get tired and overwhelmed and I don’t see an end to this pain and it’s just hard to push on. He reminded me that I need to take my eyes off of my circumstances and put them back on Christ. I knew he was right, I knew the road of self pity and depression would take me nowhere good, but that human side of me takes over sometimes wanting what I want–to feel good and “normal” and go to the grocery store and push a cart and not start freaking out that my muscles are spasming 15 minutes into the trip that I need to sit or cut the trip short. I actually made 2 long trips to the grocery store before my recent set backs, it was huge progress because I hadn’t done that in 2 years. They were not pain free but I did them and I didn’t flare bad, but now I’m back to not attempting that again-major blow to my hope in this process. Anyways, there are probably a hundred things I could list that I miss doing, I just use the grocery store as an example when trying to explain to others that the basic things that most people take for granted (and many complain about) is actually something they should be grateful for. I was thinking today how 1.5-2.5 years ago my body was an even bigger mess than now that when I tried to peel and cut potatoes my whole back and neck would go into spasm after 1 potato. I would have to call my husband to take over and I would have to just lay on the floor until things calmed. Crazy right. I can do 5-6 potatoes now before things start to get angry, so I count the little victories now. Not many people can say they count their victories by potatoes, lol.
I don’t let my kids use the word hate, but I have to admit I’m kind wanting to use the word hate with having EDS. I can handle it in most of my joints because they have a tolerable level of pain, but my spinal vertebrae slipping back and forth and being pulled whatever way my tight muscles pull them, I’m just tired of it. I can excuse the hip because it had major surgery recently, but the spine, I don’t know what it’s deal is. I’m tired of feeling like I’ve been hit in the low back with a hammer and then set on fire. Tired of ringing in my ears when I try and sleep at night, tired of neck spasms and pressure, tired of TMJ, tired of dizziness, tired of all these other crazy weird things that happen to my heart rate and blood sugar and random numbness in my hands and arms. I feel very alone and unable to relate to a lot of people lately. Then tonight I went to check these EDS Facebook groups I belong to but never go on, and as I scrolled through the posts tonight it made me not feel so alone. I was thinking “wow, I forgot how these are totally my people.” This is one place where social media can be such a help at making people NOT feel lonely and different, and can do a lot for one mentally (as well as help each other with advice).
I feel like I’m rambling, I should add I saw my surgeon two weeks ago and the X-rays as usual looked good, bones are healed. He wants me to come back in 3 months since I am struggling with muscle issues and such a slow recovery. I saw my PT too and he said although I was flared and in pain my strength was still increasing. I had 2 muscle groups still testing a little weaker, but they were stronger than a couple of months before; however the endurance of my muscles groups is still not there. He said my muscles will activate and support me, but only for 3-4 seconds and then they shut down, so we need to work on endurance of them; however I haven’t been able to follow the plan really great this past week because of the latest flare from the last time I saw my trainer 1.5 weeks ago before I quit. I always look so positive on paper with tests and imaging, but how things play out in my daily life–it just doesn’t go well often. Sadly that’s not what most doctors and PTs are looking at.
Outside of medical issues I’ve had some personal stuff I’ve been struggling with as well. I realize I put too much faith and expectations in others outside of my immediate family, which leads to disappointment the majority of the time. I’ve also had a couple of people minimize my struggles verbally and it’s been really hurtful to me and made me feel more alone. These past few weeks just have wore me down between the personal stuff I’ve been struggling meeting with the physical stuff flaring up bad and everything else just piled up at once. Again, I realize I’ve been fixing my eyes in the wrong direction. Matthew 16:24 has really been speaking to me these past days –Then Jesus said to his disciples, “If any of you wants to be my follower, you must turn from your selfish ways, take up your cross, and follow me.” My cross right now is my chronic pain and physical limitations and my selfish nature wants them gone and wants to be a little angry at God that I am not getting a lot better. However this is the cross I’ve been given to carry and to some extent will likely always be part of my cross thanks to EDS, so I need to continue on via the strength of Christ in me (because in no way am I capable of carrying on my own at all right now, not.at.all) and bare this cross and follow The Lord wherever He wants me to go, to serve Him however I can through my limitations, and just love Him the way He loves me–unconditionally. I need to stop trying to rely on others and solely rely on the source of my strength, my Savior. If this sounds like a whiny poor me post that is not what it is intended to be. This is me, a real person putting out my real struggles (physical, mental, and spiritual struggles). We love in a world where the impression of our lives we want to give others is “perfect,” but my life is not perfect and if anything on this rocky road can help others or point them to Jesus then I gladly share my struggles and imperfect life. This is my therapy as well, getting my thoughts and feelings out, sharing my journey of this hip business/EDS/chronic pain, and sharing how Jesus has called me, walks me with me, at times carries me through it all. He’s a pretty awesome guy. I’m lucky to know Him, and also lucky to have my hubby who knows how to point me back to Him when I start to turn my eyes out vs up.
Thanks for reading, I’ll post sometime after our trip to Guatemala. Say a prayer if you could that I can physically handle this trip without extreme pain. Thanks and God bless