Partners in Pain Intro
Intro by Shelly M
Living with a chronic illness it tough. It affects every area of your life, especially your relationships. Each person involved, the patient, caregiver, child or spouse, deals with his or her own feelings. The patient and spouse struggle with new tough demands on the relationship. The patient, now unable to do many of the things that had been a part of their life before, feels guilt for not taking care of their family as well as they would like to. They know many times they can not participate in activities, yet feel alone when left out. The family members may often feel guilt, frustration or even anger for needing to get out and do some "normal" things, and then guilt for leaving the patient home alone etc.
The financial burden that accompanies a chronic illness puts a further strain on the home and marriage. The patient lives with the guilt of being a burden to the spouse. Likewise, the spouse, though not wanting to be angry, often feels an anger or frustration at the added burden put on them! At times the caregiver can be overwhelmed, feeling even unable to keep up with the ever increasing cost of medications along with the added burden of their time needed to care for the patient or taking on responsibilities that the one who is ill can no longer do.
Often the physical relationship becomes difficult, too. With Interstitial Cystitis, the physical relationship can be extremely painful and can results in days of pain. With MSK, we often have problems with pain and increased infection. So, that which has in the past been a special time now becomes a conflict of its own. Each battle the frustration of their own physical needs, as well as guilt for the consequences that follow. The spouse may feel guilty seeing the patient in increased pain for days afterward. These feelings may cause them to pull away and leave, the patient feeling abandoned and hurt, too. Repeatedly I have seen patients who either have marital and family difficulties or actually end up in divorce.
Looking for support for the spouse of the chronically ill patient is what led me to talk to Kevin Ridgeon and ask him to write an article. Kevin's wife, Angela, lived with multiple chronic illnesses, including MSK for several years. She died pretty suddenly earlier this year through some unusual circumstances. Kevin was a husband who was a great support for his wife in life and now also in her death, he shares with us honestly the deep turmoil that the caregivers also go through. In his own sorrow he has/is setting up a Web-site to chronicle Angie's daily struggle with being chronically ill and eventually her death. For more information you can send me a message through my username MSKShelly.
l <font>Partner In Pain</font>
by Kevin R
My name is Kev and I was married to Angie who for roughly 20 years suffered from a painful condition known as Medullary Sponge Kidney (MSK) amongst a number other health issues some related to MSK some not. Angie and I married in August 1981 and were together until she died on the 27th of January 2009. We have one married daughter and two granddaughters who Angie at least got to be with for a while. I was 27 when we married and Angie was a year and a half younger, I was in the Royal Air Force and Angie worked for the local council. At that time we were relatively healthy and as far as we knew had an entire lifetime to spend together partying and living as full a life as we could.
Beginning of The End
Angie started to have pain on a regular basis from the mid eighties and in 1995 she was diagnosed with MSK. This did not mean a lot at the time, the problem had been identified and could be treated WRONG!!! There is no treatment for the condition itself just for the symptoms, constant production of kidney stones, extreme kidney pain. Apart from occasional periods where a change of pain treatment brought temporary relief, Angie's life became more and more restricted. First she had to give up the things she did outside work, she had been a Samaritan, taught evening classes in Gaelic, worked with victim support (supporting victims of crime),regularly attended church, and was politically active with the Scottish National Party. Eventually she also had to give up working as a learning difficulties support worker and then became less able to do mundane things like shopping, housework, babysitting, and cooking, which she had loved to do. Physically, Angie became more and more confined to her bed with constant tiredness and pain.
As Angie's condition became worse she needed more and more assistance with everything in her life and my life changed accordingly. First, I had to give up the job I had as I was working away from home and find something closer to home. Then, as things got harder for Angie, I eventually had to give up work and we had to move from one end of the country to another to be closer to our daughter in case of an emergency. Once I was at home full time I had to take over all off the domestic chores and make sure Angie did not fall down stairs or anything else dangerous.
Slowly, before my eyes, the woman I had married and loved was changing and there was nothing either of us could do about it. I can-not speak for Angie, but I can say what I think I saw. Over time she was forced to give up everything that defined her life, what was left had to change to suit her circumstances, contact with and cultural stimulation ceased, contact with other human beings outside her immediate friends and family ceased. An active sex life disappeared. Frustration over what was happening was reinforced by guilt over the burden she felt she was putting on others and myself around her. Medical help was available, but full welfare help was refused, as she did not meet the criteria. My own feelings were pretty similar, I was frustrated in all respects that we could no longer lead a full and active life together. I was angry with Angie for doing this to me, I was angry and guilty with myself for being angry with Angie. I was angry and guilty about not doing enough to help Angie.
There were a million and one other things I felt, all of them bad and destructive. The one person in my life I could normally discuss this with was Angie and she was the one person I could not burden with it. She had enough on her plate already. I think that left to itself to fester and grow this mix of feelings would have destroyed the years of love and laughter we had shared and they would have meant nothing. I would have convinced myself that Angie was better off without me. I knew this was happening and it became time to make a stand, I consider myself more of a coward than a hero, but this was one fight I could not walk away from. I could not leave Angie to fight this alone. The last thing that she needed was for the one person she trusted most in the world to abandon her.
I knew it would be hard. I knew we stood little chance of winning a single battle, let alone the war, but I also knew that in this struggle Angie needed my support and the least I could do was stand by her. We both knew that this would be a marathon and not a sprint. There might be single moments of happiness, but long term there would be the continuous pain, anger, frustration, and guilt. The only reward for this is at the end was that when Angie died I could hold my head and say I was there for her and I can remember the moments when some small thing I did made her happy.
I have written about Angie's life and death before. The first part of this saga I found to be relatively easy. When I got to describing how I felt all the guilt I felt at the time came flooding back. Did I do the right thing? Did I do enough for Angie? I don't really know, all I can say is I did my best. I have never felt the need to prove myself, to be macho, but the final part of the write has been really hard, I am a man I am tough, I should not cry but now at this moment my tears are falling on the keyboard.
Goodbye Angie; you have no pain now and I will love you forever.
(I hope this article brings healing to the relationship of many
couples struggling with their own feelings. Angela to me is
the symbol of the need for research and education for the treatment
of MSK and some of the complications that can go with it.
Together we have to work to find solutions and raise awareness.
IT IS ONLY TOGETHER THAT WE CAN MAKE A DIFFERENCE!