Is it ME?
When I first starting dating my now-husband, I felt like I was on a rollercoaster of emotions. I hadn’t long come out of a very difficult long term (12 year) relationship but felt it was time to at least give myself and this “great guy” my brother-in-law was lifelong friends with, a chance. I was excited but scared, confident but nervous and didn’t know what to do or say, but I had a good feeling about it and met him anyway. We (obviously) got on very well and started seeing each other more and more regularly, as you do, but it felt like all of a sudden he was cancelling on me quite a bit. It was, “I’m feeling a bit wiped out, can we do it tomorrow night?”, “I don’t feel like going out tonight, do you want to come round or will we just leave it tonight?” or “I’m just going to chill and watch football tonight, I’ll see you later or at the weekend”. I felt that maybe something wasn’t working for him and that I’d let myself get in too deep too soon. Why was he cancelling? I thought, “Is it me?” To a certain extent it was, but not in the way I thought it was!
My husband Neil has been tirelessly trekking back and forward to the doctors for over eight years. He isn’t just tired, he is fatigued. He has very little concentration span, aches, pains, muscle spasms, sweats, problems sleeping, irritable bowel syndrome symptoms, dizziness, restless legs; the list of symptoms goes on and varies from day to day. It’s confusing, exhausting, worrying and the worst thing is not getting a definite diagnosis. The doctors have told him that he has C.F.S. or Chronic Fatigue Syndrome; possibly M.E. (Myalgic Encephalomyelitis). However, diagnosing it completely means testing for every illness it “might” be and scoring them off one by one, and with him being Type 2 Diabetic along with it, diagnosis is made even more difficult. It’s a very long, drawn out process which tests not only his physical and emotional strength but mine too.
As the wife of a CFS (possibly M.E.) sufferer, it’s turbulent to say the least. I’m frustrated that I can’t help my husband and take away or even ease his symptoms, scared that he’s never going to feel better, emotional seeing him upset and tired from the toll it’s taking on both of us. I just want my husband to be healthy and happy; is that so bad? I hate seeing him scared, feeling hopeless and worrying about why he feels the way he does. It means that I have to be extra understanding and supportive, do more around the house, push myself to do the shopping when I don’t feel like it and walk the dog when it’s pouring with rain and cold outside, and all I want is to curl up with them on a warm sofa with a cup of tea!
The hardest thing about an invisible illness is just that. It’s invisible, especially to all those who don’t suffer from it or see someone suffering from it every day. When we don’t make a family event or have to cancel a visit to a friend at the last minute, it can be hard to explain why. Although friends and family are as supportive as they can be, they can’t truly know how much of an impact his illness actually has. It’s not laziness, it’s not that he doesn’t want to go; it’s just that he physically and emotionally can’t! It’s hard to explain to others that my husband suffers from an illness that you can’t see. It isn’t a mental illness and he isn’t disabled, quite the opposite. He works part-time, walks the dog every morning when he is able, helps with washing or taking the bins out (that is his designated job; I try not to do that!) and makes the best cups of tea I’ve ever had! He tries his hardest not to let his illness get to him and I think that’s what makes me sad the most. It still gets to him; to us, really. It grinds him down. It is slow, painful and makes him feel weak. But I know, in my heart, he will keep fighting and won’t let this illness beat him. The funny thing is, besides all of this, it’s his illness that makes him so strong. It shows strength not only in physical form when he manages to walk the dog or get to work, but emotionally too. I suffer from depression and anxiety (also invisible illnesses), which can be just as hard and relentless to deal with, but he stands by me, supports me and does everything in his power to make me feel loved and confident. It shows strength of character; not giving in and trying so hard to overcome the symptoms and to teach others that having an illness doesn’t necessarily mean you lie down to it.
Another fine example is my little sister Rochelle who is an Ambassador for M.E. Support. She also suffers from M.E. along with Fibromyalgia. Rochelle had always suffered from illnesses as a child. She had several bouts of tonsillitis which never got better and resulted in her tonsils being removed. She suffered a lot from tiredness and colds, and flu never seemed to get better with paracetamol and Lucozade like it did with me and our bigger sister, Kirsty! When she was diagnosed with M.E., somehow it didn’t come as much of a surprise although of course we wished she didn’t have to be diagnosed with any illness. She is lucky that she’s had her diagnosis however, as waiting is one of the worst things. Rochelle keeps fighting too, uses her experience to help other sufferers and informs people about the illness and how to best show support. She is currently pregnant with her first child and blooming wonderfully, just like any other pregnant woman would!
I am so very proud of both my husband and my sister; it’s hard to have any M.E. sufferers in the family let alone two, but sometimes two is better than one, it’s about support. They understand what each other is going through and it’s good to have someone else who “gets it” so close; plus it’s nice for me to have someone else who understands my point of view too, as my brother-in-law Dan supports Rochelle as I do Neil. I’m also very proud of my whole family and myself. We are strong people who care and love each other, no matter what. I was brought up that way and I’m so glad I was. It means that I didn’t just give up on my husband or walk away when things got tough. I stuck with him, supported him and loved him just like a good wife should. And no matter how hard it gets, I will be there for him. After all, it’s not me…it’s M.E.