CRPS My Journey - Chapter 5: CRPS and my relationships

How does CRPS affect your relationships?

Remember in the previous post we spoke about how CRPS has the ability to create this immense unfounded guilt? Guilt, regardless whether it is substantiated or unfounded, has an enormous impact on our relationships. And it usually has the greatest impact on the people closest to you, the people that intimately knows you, love you, look up to you and respect you. Add this unfounded guilt with all the other complexity of CRPS and you have a sure killer of relationships. Unless you work at it. And I know from experience, that this may be hard as you are not always in the right state of mind or have enough energy to do so.

One of the most common issues that other CRPS warriors share a lot is the breaking up of relationships. Friends that do not understand what they are going through, loved ones - husbands, wives, fiancés - that walk out on them as they cannot take it anymore, siblings not talking to them or avoiding them as they feel that they just complain all the time, people losing their jobs as their companies and colleagues start seeing them as obsolete. CRPS, as with various autoimmune and other serious diseases, often spiral into a very lonely life, which can end in depression, desperation and ultimately, in certain cases, suicide.

So how did CRPS affect my relationships thus far?

1. Marriage life

(i) Communication

One of the biggest changes that I experienced within my marriage is on the communication side. Yes, I do want to know how Teresa's day was, what is making her happy, what's making her sad, her worries, and what makes her feel special. However, CRPS, and especially when I went onto Cymgen, has led to some emotional bluntness. This was not by choice. It is an unfortunate direct result of the meds, but it still has the same outcome in that I seem to be non-responsive, not listening, maybe even not caring, when in actual fact it is quite the opposite. Deep down my emotions and feelings for her has not changed. It is being subdued by that which is supposed to help me cope with the flaring of the CRPS, and as a result I am thrown into a catch 22. 

On the one hand I want to feel and experience and connect to her on a deeper emotional level, but then I need to go of the meds, which will inevitably increase the effects of the CRPS, pushing it back into overdraft and making me less able to do stuff with her. On the other hand, I want to do stuff with her and create wonderful and positive memories with her, but in order to assist with that, I need to use the meds so that I can be better enabled to handle the flaring of the CRPS. This often results in me being emotionally distant. So yes we will create memories, but not necessarily with emotional involvement.

(ii) Intimacy

And then of course CRPS also has a direct effect on the intimacy and physical part of our relationship. People are not only emotional, social, intellectual, spiritual beings. We are also physical beings, and as physical beings we have physical needs...and especially in a loving and trusting relationship.Unfortunately pain and meds, and even the combination thereof, does often cause hormone changes that may lead low sex drive, erectile dysfunction, vaginal dryness, disinterest or indifference to initiating intimacy, anxiousness, depression and a load of other possible issues that tend to strain the physical connection between two loved ones. And although the physical "us' is only one part of our wholeness, it directly affects our emotional, intellectual, social and spiritual parts of our humanity. And this in return just boosts the unfounded guilt that we already experience. So this vicious cycle just goes on and on, fuelling itself all the time. If we do not break this cycle, it may eventually lead to other relationship problems and ultimately to separation, or even divorce.

The irony of it all is that, open communication and complete unconditional trust, forms part of the foundation of a healthy and strong relationship...the two cornerstones that gets hammered the most when living with CRPS. So the two things that can save the relationship (and yes in my own value based foundation, my faith in Christ is my foundation on which everything is built, however I am not speaking about faith here). Whether you believe in God or not, any relationship need open communication and complete, unconditional trust. As said previously, with CRPS often comes unfounded guilt, social and emotional distancing and loneliness or depression. And speaking from a man's point of view, when the physical intimate part of your relationship is affected as described above, one tends to feel even more guilt as you feel that you cannot fulfil your partner's needs, which cause you to spiral even further into depression, causing even more stress that leads to more struggles and more feelings of guilt. And eventually you start to shut off from your loved one completely. And the irony in all of this is that your partner is actually the ONE person that can help you break this cycle, if you would just open up to them. 

And I can already hear a number of men say, "JJ men do not show emotion. Men do not cry. Men need to be the strong one. Men need to be able to satisfy their partner". When did society start to define who and what men should be and how we should act? It takes a real man to be able to open up to his partner and bare his emotions.

(iii) Bare honesty

I remember a couple of years ago, a friend of mine did this exercise where he and his wife would get bare naked (within the privacy of their home). They would speak openly to each other about their fears, about their worries, about their needs, about their deepest desires. They would then go onto the next part and close their eyes while the other party would touch them on different parts of their body and they would share their true feelings of how each touch made them feel. They had two golden rules though - 1. nowhere during the exercise may they in any way engage in foreplay or sexual activity and 2. total unconditional trust and communication. He said that this was the most daring and humbling experience for both of them, as they literally bared it all on all levels - physically, emotionally, spiritually, intellectually. All pretentiousness, all masks, all barriers were down. There was literally nothing between them. And for the first time they connected on such a deep level that they both ended up crying, with a better understanding and a deeper love for each other.

I don't say everybody should do this, but we need to find a way to protect our relationships and to build our defences - not against each other, but as a unity against the horrible effects of CRPS. 

(iv) Guilt

One of the things I felt especially guilty about, while I was working up to the acceptance stage, was the fact that I could not be strong enough to support my wife in many ways. As mentioned before in this blog, my wife was diagnosed with Lupus (SLE) about twenty odd years ago. Pain has been her normality for many years. I remember her telling me a couple of years ago that one of her biggest fears was to have a day with no pain at all. As pain was "normal" for her, she feared that she would not know how to handle not having pain. It was just the degree of pain that differed from day to day. Now, here I was, complaining, expressing various emotions, struggling to accept what was happening with me, while she never complained, never said when she hurt, always smiled through it all. 

The company that I work for has a good relationship with a therapist that offers her service to the staff. During my Return-to-work interview, my Centre manager asked me to make an appointment with the therapist, and I went. As we were talking I explained to the therapist how my wife has been living with lupus for so long and how guilty I felt for this CRPS coming into our lives causing me to become less of a man, complaining and struggling to come to grips with what is happening, while I need to be there for her. The therapist became quiet and when I was done she said the following: "Why do you feel guilty? What is happening to you is too much for one person to handle on their own. You had to be strong for your wife for so long, this is your time to be weak, to work through the mourning process so that you can get to the place where your wife is. This is the time that you need to be able to reply on her, that she would want you to rely on her. She will understand. She will support you. She has been through this exact same process. Do not push her away." As it turned out, the therapist herself has been living with Lupus for many years, so she knew exactly what my wife was going through.

(v) Choosing her over and over again

Our actions and decisions is often driven by fear. I had to overcome my fears and learn to open up to my wife. It is always difficult to be honest to someone about your emotions and your fears. It is human to fear that you will be rejected when you show the real you, but remember - before all of this, you and your partner chose each other with all the faults and challenges that each of you brought to the table. So why should this be any different? Often we do not know where to start. The important thing however is that we start...and the sooner that we start the easier it becomes. 

I remember when my wife was diagnosed with lupus, a week before her 21st birthday, we were already in a relationship. So we were able to go through this dark time in her life, together. We could grow and learn together from the start. By the time we got married, I knew what I was getting myself into. I knew that there was going to be good days and bad days. And I was okay with that, knowing that, as far as possible, I would do everything in my power to be there with her every step of the way. Now that I had this mountain to climb, I had to be reminded of that. I had to ask myself, "Why would the woman that I have loved for the last 25 years, with whom I've been through so many life events, the mother of my children, suddenly turn her back on me in my darkest hour?" And I had to realise that my fears and my doubts was the enemy, not the CRPS. Yes, CRPS happened and continues to happen, but how I react to this change in my life, and how I allow it to define my being and my relationships is what matters.

It still is not always easy to tell her when I have a bad day, especially when I can see that she is not having a good one either, but it does give one peace to know that you are not alone in this.

2. My children

(i) Restrictions

I have been blessed with two amazing boys. Both loves the outdoors. Malan, the eldest, is 11 years old and wants to become a veterinarian (since he has been about two years old). Liam is turning 7 next month. He is the wild child, the extreme sporty type - always joking, always pranking his brother and his mom. There is never a dull moment in our house.

Unfortunately, with CRPS comes a lot of restrictions. The saying in the book of Matthew, that "the spirit is willing but the body is weak" often applies in a different, more direct context to CRPS. I often look at my children and think to myself, "today when I get off work, we are going to do this or that", and then we get home after work, and I just do not have the energy to do so, or my hand is in so much pain or burning that I just cannot motivate myself to do so. And this breaks me, as I have always told myself that I will never be an absent father, and that I will teach my kids to love and share what I love, to go hiking and kayaking, rock climbing and such.

But then you look at what you have become as a result of CRPS, and you feel like a failure. I remember one evening after we have showered, my youngest son, Liam, and I were chatting, when out of the blue, he looked at me, and took my affected hand in his small hands, and asked, "Daddy, when will your hand be healed". With tears in my eyes I realised on how much memories we are losing out because of this horrible disease.

Children should not suffer because of our disabilities, but unfortunately this is life - this is the reality for many of us. Some parents do not want to be a father or mother, they see their children as a burden, while there are parents who wants to be a father or mother, that wants to do everything with their kids, but they are hindered from doing so because of a disability or disease.   

(ii) Acceptance

Children often accept, even when they do not understand. But for us that are trying to understand, the effect that it has on our children is hard for us to accept. I do not want my kids to grow up, remembering their dad only as someone that sat on the couch, always in pain, but with whom they had no relationship. The hardest part of looking at my family is seeing, that because of the effects of the CRPS and the meds, my kids seems to be closer to their mother than they are to me. Remember what I said about dissociative behaviour? I don't say that this is the truth, that they are closer to their mother than to me, but looking from outside the circle, that is the perception that I have. And I know that is a barrier that I need to break through so that I can see myself inside the circle as part of my family, and not from the side-line as if I am looking at them from the grave. But it is not easy.

(iii) Adjusting

Through my short journey with CRPS, I had to make some adjustments. One of these changes was that I had to find a way to be able to do stuff with my kids, while still protecting my hand. Not a lot of options when it is your dominant hand. My kids love the water. The problem with my hand is that whenever I put my hand in cold water it feels like putting my hand through a bunch of daggers, piercing skin, bone and tissue.

I remember at Christmas time last year we were spending the day with family when the kids begged me to go swimming with them. I had to muster up courage to convince myself to get into the water. There was this battle inside me where my mind said go, but my hand pulled my body back. And I could feel the fear of my hand pleading me not to do it. So I had to make a conscious decision, not based on fear, not based on feelings, but based on my love for my children. So I just dove into the water. The moment I hit the water it was as if diving into flaming daggers. Long story short, through the pain, I was able to teach Liam to swim that day and the joy on his face, not only because he was learning to swim, but because his dad was teaching him and swimming with him, made the pain and burning and sleepless nights afterwards worthwhile. Soon after this I went and bought myself a pair of 3mm diving gloves. So now whenever I go into the water with them, whether it is in a swimming pool or at the beach I wear a diving glove on my right hand. It does not completely take away the pain and flaring, but it does help somewhat to warm up the water that enters the glove, making it just that little bit easier to withstand the cold. And although I have my limitation of how long I am able to withstand the cold, it does give me that couple of minutes that I can enjoy life with my kids, as normal as possible. 

Just as with the diving glove, I have gotten used to wearing a compression glove every day of my life. Initially, my hand was irritated with the feel of the glove on my skin, and at times it still is, but I had to decide which was worse - the irritation or the pain. I chose that if the glove helps to lessen the swelling and the pain, and even helps a bit against the cold, then I would try to endure the irritation against my skin. In a sense I had to teach my hand to accept the sensitivity or irritation in order to receive the benefit of lessening the pain. Don't get me wrong, the compression glove does not take away the pain and burning, and it might seem that it has become a crutch, but as Wendy also reminded me, "if the glove does help, it is a much safer option to have that become a crutch, than becoming dependant on medication that have long term effects". The glove also enabled me to bring my hand more into the open, not hiding it in my pockets any more, far from the world to see. If it sounds like living with CRPS is always a battle between good and evil, or deciding which is the lesser of two evils...it is because with CRPS that is often the case.

3. Friends

(i) Sifting process

I have heard this a lot, "CRPS showed me who my real friends are".. Yes, CRPS, like many other challenges in life, has the ability to sift out your real friends from those that only knows you when they need something from you. I remember one of my friends, for whom I have always had great admiration, phoned me up when he heard that I was diagnosed. The first thing he said to me was, "I do not know what your relationship with God is like these days, but this whole thing does not sound right" Well that ended in a very short conversation as I did not have much to say to him after that. I mean how do you answer someone who has, for some reason, a pre-set idea of cause and effect, not accepting "things", that does not make sense to them, as a medical condition. 

Yes, I believe in Spiritual warfare, but I also believe that not everything that happens to us is a result of something we did to tick God off, or that the devil is sitting and waiting around every corner, to get us. We were born into a sinful broken world, where diseases, famine, hunger etc. is part our existence. Yes, some things happen to us due to decisions that we made, or because of what is happening in the Spiritual realm...while other things may simply happen because we are all vulnerable human beings. This specific friend got Covid like many of us, and nobody suggested it was because of his relationship with God. He simply got infected by a virus like many of us. 

A great number of people that I spoke to, experienced exactly the same. Once the disease started throwing them with more curveballs, or bad days than good, their friends started to abandon them. Suddenly they were seen as the anchor that held back their friends. This is heart-breaking, but it is a hard reality for many CRPS warriors.

(ii) The rise of true friends

But it is not always bad news. It is in times like these that one also find out who your true friends are. I have spoken to people who suddenly rekindled old friendships that have drifted apart over the years. Suddenly these friends were back in their lives offering, wanting to be there for them - not wanting anything in return. Other people that I have spoken to, made new friends, either due to them sharing the same struggles with CRPS, or because they live with someone who has CRPS. For people that are constantly living with extreme pain, it is not always that easy to make friends outside of a support group. 

Although CRPS is a lonely disease, it does not mean that you are, or that you need to be alone. There are a number of support groups where CRPS warriors can join, and where they can share their own experiences without fear of rejection, verbal abuse or shame. Where they can make friends that understand their struggles. People that look out for each other and support each other. One of the things that helped me a lot, and that made me feel lees alone in this, was being part of a couple such groups. Especially those burning nights when you cannot sleep, there is always someone, somewhere in the world that you can reach out and talk to. It makes you feel just that little less insignificant in this big world, knowing that you are not struggling alone, that there are others like you out there, experiencing the same challenges. People that can sympathise with you, and motivate you and talk sense into you, as they can truly empathise with you, as they themselves have been where you are.