There’s that old English pleasantry that we all do, you see someone and greet them with ‘Hiya, alright?’ Now, although it should be a question, we all just know that it’s not. It’s completely rhetorical and the person asking doesn’t really care. No matter how many children have come downstairs with a dirty school uniform on just as you’re about to leave, they don’t care. If you’ve got raging PMT and want to rip out their throats just for asking, they don’t care. Or maybe if you’re a man you’ve been at the end of your lady’s PMT, they don’t care. And they certainly don’t care if you’ve got a 10 yr history of chronic health conditions, medication coming out of your ears and side effects that make you really irritable and intolerant to them. Which, is exactly why both parties just nod pleasantly and say, ‘oh fine thanks. You?’
Then there’s the next level up, friends. That is if there are any that have stuck around, most fall by the wayside or just can’t understand why you can’t go dancing when you look fine, ‘on the outside’. What they fail to realise, because you look well, is that on the inside your head is foggy, you’re joints already on the verge of popping and the merest of light already feels like you’re already at the club. Even before you get out of bed your joints feel heavy and at times as if they are going to just burst, your meds have given you water retention or you’re so constipated that you don’t fit in any other outfit than your onesie. Sad, yes, but true.
Then the next level on the social scale would be extended family and in my definition includes parents, grandparents, siblings, aunts and uncles etc. As I’ve said in a previous blog I was lucky to have a prognosis of Lupus immediately, but then the more trips to the Dr’s as they try to get your medications right the more conditions you’re diagnosed with. I remember after telling my mum that I also have chronic fatigue syndrome and fibromyalgia she said ‘Oh, so you haven’t got Lupus then?’ Those questions came every time I got a new diagnosis one after the other because she just couldn’t understand that her daughter’s body has just randomly begun to attack itself. I have stopped telling my parents what’s going on and just say, ‘oh the usual’. Apart from my husband the only other person I tell is my brother, but that’s via email and sometimes hard to get across what I mean.
I think it’s just as hard for those that love you to watch the deterioration, especially at a relatively young age. I know that goes tenfold for the three wonderful boys/men I live with. My husband has often said how useless he feels and that he wishes he could take the pain for me. I can understand why he would want to do this as I would for him, but even before I was poorly he was the more useful one so it’s probably best this way around. I don’t suppose people realise until they’re in that situation how hard it is to be incapacitated and watch life happen around you. The guilt I feel for my family cannot be quantified, every day that I’m stuck in bed and just lay there listening to my husband running the house without my help, which he does amazingly well by the way. Then the guilt I feel every school holiday when we can’t do anything because I’m unwell, again.
Then in almost every situation there’s the consideration of, ‘How much can my body handle today? ‘What affect is this going to have on my high blood pressure, COPD and kidneys?’ People don’t see those parts of the disease; they don’t understand the absolute exhaustion you feel every single day. The pain you feel every single day, the mental fatigue you feel every single day. The sadness and depression that you can feel every single day. The list could go on and on, but if you’re reading this and know someone with a chronic disease maybe look at their eyes or posture, even if they have a smile on their face, the clues are there, if you look close enough.
The only person that knows exactly what I go through is my long suffering husband. Since I have been having mental health issues due to a frontal lobe atrophy he’s really gone through the wringer. My short term memory has become awful to the point where I’ll walk out of a room and forget where I was going and for what reason. Or I’ll start doing something, even starting a sentence and if I’m distracted It all goes out the window I just don’t have the ability to do two things at once anymore. So when my husband told me his New Year’s resolution was to have more patience with me I was shocked. He’s never been a modest man but even he doesn’t realise how much he helps me, when I get stressed or confused he knows how to defer my attention, he does have patience, the patience of a saint and never, ever makes me feel bad when I’m not 100% mentally or physically available to him. He’s put up with it for 10 yrs and he didn’t sign up for any of it. I hope everyone reading whether you’re poorly or not is lucky enough to have someone like my husband. Or children that don’t complain about my, at times, endless days in bed and lack of fun times during the school holidays.
To take some of the pressure off my husband I’ve decided to try a support group, I’ve never been to one but my counsellor suggested it. I’m not sure what to expect and do get very anxious even to the point of palpitations if I go anywhere unfamiliar, so basically anywhere that isn’t my house. If anyone has any idea what I can expect from this it would really help.
Thanks for reading.