Coffee with Esther (November 2022)

We Are All in This Together

Hi All, 

This month has not been the greatest month for me. I am currently struggling with some new symptoms which are making me feel very low and tired. For those of you that have not been on the Virtual Coffee Breaks this month, I will explain. 

In the last four months, I have lost a considerable amount of weight and I am struggling to keep food down. The nausea feeling, or being physically sick, is making me very tired. I haven’t slept well in years. Then the bloating and stomach cramps have been pretty bad. And that’s on top of the usual issues. 

I have been going for tests again, from CT scans to a colonoscopy. But throughout this ordeal I’ve had my loving partner holding my hand (not literally as I would scream), but supporting me and protecting me. So I was thinking, does everyone have a partner like mine? Does every partner understand our condition and know how to deal with its effects on the relationship and partnership? 

Well, from talking to others on the Virtual Coffee Breaks, I know I’m pretty lucky to have my husband, and how we fight this together as a team. So I got to thinking, how can we help our supporting partners? How can we give them some guidance on how to come to terms with our condition? Below is some advice for supporting partners. 

Understand the condition, and help get the whole family understand it. Educate yourself and read as much as you can on the condition. Have a proper conversation with someone with Degenerative Cervical Myelopathy (DCM) to find out how, or what, they are feeling. Remember, no two people with DCM suffer the same. 

Understand that coping with high amounts of pain, or strange symptoms, has many consequences. One of which can be a short temper or irritability. But also to understand that the odd short response, or angry outburst, is far more likely to do with DCM, than any annoyance with you. Understand that this applies to the whole family. Everyone, even the children, must have some grasp of the implications of living with someone who suffers with DCM. It’s better that children grasp the realities of it, than worry that they may have done something wrong to upset mum or dad. 

Talk as a family and acknowledge your own feelings and grief. Never hide anything from each other. Understand the sufferers feelings. You might hate hearing about how bad your partner with DCM feels, but talking about it might help. A problem shared is a problem halved. Talk to your partner about anything you have going on too. You may also have a bad pain or feel under the weather, but never compare your pain to theirs. Always talk about each other’s problems separately.  No one is expecting anybody’s life to change. So partners need to openly talk about how they are feeling. But never blame anybody for having DCM. Never take your frustrations out on the sufferer, or blame them in any way.

The Support Group is a great place for supporting partners to open up and get advice from others. There are many benefits of joining a support group. Support Group on Facebook is open to people with the condition, partners, and family members. You will get more of an understanding of what, and how, your partner is feeling. You can also get advice as a supporting partner. You need to come to terms, and accept, that DCM is a chronic condition, and that there is no cure for the symptoms. This is true for both the sufferer and the supportive partner. The symptoms can only be managed by them. Accept that the pain they are feeling will never go away. So don’t waste time trying to find the magic cure. Accept you can not take it away from them, but you can make their lives happier. It’s a tough job being a partner of someone with DCM, as a DCM sufferer doesn’t even know how they are going to feel day-by-day. The pain is invisible, so the more you understand, the more support you can give your partner suffering with DCM. 

Believe your partner. This is a big one. If someone is saying they are in pain or their legs are weak, anything, believe them! This condition is so invisible. It can be too painful to walk, or they are too weak to hold something. Most of us want to continue doing everyday things, but we do so in pain. We all know if we don’t use it, we will lose it. One day we can brush our hair, but the next day we can’t. Believe us. Sometimes getting surgeons or doctors to believe us is hard enough, so we need this assurance that we are definitely believed at home. 

Ask how you can help and don’t just become a carer. There is nothing worse than feeling useless and not having a place in this world. But asking for help is the hardest thing to do. Ask your partner what they feel they can and can’t do. Create a list with answers, so you know that if they are having a bad day, you can do something for them. It would make them feel cared for, but as a partner, not a carer. You can care for someone whilst keeping it as a partnership and team. Sometimes you might have to care more for them, but keep the relationship happy and healthy. Still act like you did before this condition was around. Be with them, rather than being there for them. So just ask us, but don’t take over and not let us do something. Peeling the potatoes, whilst you are preparing the rest of the meal, makes us feel accomplished whilst also feeling part of the family and being useful. 

Lastly, do not change plans. Well, what I mean is, accept the fact that sometimes things don’t go as planned. Sometimes your partner will not feel like going out. This is not their fault. When our bodies are telling us we need rest, we need it now! It takes us, as sufferers, a long time to accept our limitations, so do not get mad or angry. Just rearrange it. But still have dreams together, still go out together, still keep the romance alive. You still love your partner. Their personality is still there, but sometimes our bodies let us down. So laugh, enjoy each other, and learn new stuff together. Don’t let our world get any smaller than it already is.

I do hope you and your partner grow stronger together and fight this as a team. 

Virtual Coffee Breaks in November and December are as follows:

  • 17th November at 6pm GMT
  • 1st December at 11am GMT
  • 8th December at 2pm GMT
  • 15th December at 6pm GMT = Christmas Jumper Party! 

I hope to see you there!