Down sizing required

At last, Christmas is over, done and dusted for another year. It’s a time of year that is hard to handle when you’ve lost your health so completely. Inside you want to have everything as perfect as those long past, but you know it’s totally impossible to get anywhere close. For me, the hardest thing this year was the trail of relatives. Don’t get me wrong, it was lovely to see them, especially as we seldom see them at any other time, but getting them to totally understand that limited energy, means limited ability to even just sit and listen to their chatter, is hard. My daughter Teressa and her husband John were here for two days and I got through their two five-hour visits tired but still feeling alive. Yet, having Adams Mother, sister, and his sister’s girlfriend here for four hours, drained me totally. I don’t know if it was the fact that I had never met Amy or that Alison and Jenifer rarely come round to call, but those four hours, in one fell swoop, took as much as the two visits from Teressa and John did, and more.

Both visits had been organised in advance, but despite that, I found myself confused and anxious about the finer details. I knew Teressa and John would be here for at least one meal, if not two and I didn’t want to have the expense of their last visit when we landed up ordering Chinese. It was nice but I honestly can’t afford another £80 bill. I don’t know how many times I tweaked the Asda shopping list before time ran out and I had to go with what was there. I had gone for a simple array of cold meats, pates, smoked salmon, and pickles, to be served with bread and crackers. If they were to be here the next day as well, well toast and pate would have to do. I have never before gotten myself as wound up about people coming to visit as I did this time. I guess, I am more aware of my health these days than I have ever done before, especially when it comes to my memory.

It was so good to have my daughter here again. There is something about our bond, that nothing can get in the way of, not time, not distance, not anything. We as always were instantly connected and leaving the two boys trying to get a word in edgewise, and trying to work out, what we were finding quite so funny, or possibly so intense. It has often been said that we are two parts of the same person, not just as we look alike, but our sense of humor and inflections of voice are almost identical. She though has the luck of being both healthy and employed in a job that financially means life can be more than comfortably enjoyable. We did though have our silences, they always felt as though they were down to me, as my brain kept going blank and I could find nothing to say what so ever. It’s not as though my life is filled with exciting things to talk about. No matter what I do or how I try, being housebound really does have it’s limitations. Despite the silence those few hours passed with ease, my fatigue was limited, but clearly there. In some ways, I think the silence allowed me to recover, to recenter and move forwards at my pace.

The visit from Adams family was the total opposite for me. The hardest part was trying to listen to their chatter, well it was his turn to be at ease and mine to be the outsider, part of, but not truly connected. The four of them were totally connected and I was lost on the edges, occasionally connecting but then lost again. I could feel that Adam didn’t want them to leave when I called it a day, but I had already gone past the three hours agreed on and I honestly couldn’t take any more. If final proof were needed, it came that night when I slept for 14 hours and Adam still had problems waking me. My alarm had been sounding for 10 minutes when he decided that he too should join in. but not even shaking me or his voice found it’s way through at first. When I did wake, all I wanted was to be left alone to sleep again. The three of them all together had drained me to a point I hadn’t expected, especially as all we did was talk.

You don’t really feel or notice your health changing. You can’t really measure it when you have been ill for so many years, that ill, is quite simply our life. You forget when one day runs into another so seamlessly that even their identity is gone, just what normal life really is and just what it really does to us. Two simple family gatherings, the sort of thing most people do every week, not full blown parties, not huge cooking marathons, just people in my home sitting talking, yet they were enough to drain what energy I could find. It’s days like these that show me just how ill I have really become. I never understood those stupid rules that hospitals have of just two visitors to every bed. They made no sense at all. How can it really make the slightest difference other than to the number of chairs that they have? Well, now I understand. Now I get the real reason. Now I see just how simply being surrounded by the healthy can truly impact on our health.

I wouldn’t change those three days as they were both important and fun, but now I have a much deeper understanding of my health, of just where I am on that scale of healthy. I knew already that my ability to be amongst people was diminishing, thanks to my carer and the district nurses, As much as I need them and even to some extent enjoy being with them, I knew that time limits were very much needed. Now, I actually believe that a second rule is needed. the rule of two at a time may well be the way of the future. Adams family proved what I thought already, that my brain quite simply can’t keep up and fatigue becomes a huge issue. We may love our families, but without trying to sound cruel or nasty, small doses has become a necessity.

 

Please read my blog from 2 years ago today – Right or wrong

I found myself in the middle of the night just sitting on the edge of my bed, I had woken up for no reason I could find and for equally no reason I decided I needed to sit up, I was sat there still wearing my earplugs…..

30 thoughts on “Down sizing required

  1. Been there, done that Pam, know exactly how you felt. When I was at my worst with M.E. Many years ago , fatigue was one of the major symptoms along with others, I just couldn’t handle conversation with one person for any length of time, never mind two or three people. I sympathise with your dilemma you will have to make alternate arrangements for next year.,Families will be very understanding under these circumstances if it is pointed out. My hubby can only manage one hour of visitors chatter and he is shattered for the next 24 hours. Good to read your post again and be connected, thank you Pam. 🌷

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    • To be honest, I’m still wondering if I have recovered, the last two nights I slept 14 hour each again. My health has been going down over the last few months and I’m never sure how I will be when I wake, regardless of how long I sleep.

      I think Adams Mum was upset that they hadn’t been invited to meet up with Teressa and John when they were here, there is no way I would be able to survive five people at once. Like everything else in my life, it all needs rethinking. 🙂

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  2. I think it really does make a difference when you feel like the odd man out too. We have to listen harder. We have to think harder about when to speak. We have to be “on” the whole time.
    With your daughter, you were more at ease. If you needed silence for a bit, no biggie. You didn’t stress about conversation.
    I strain so hard in situations because of my hearing difficulties that I’m exhausted after being with most people, but there are a few who I feel comfortable with, whom I can hear better, when I’m with them, it’s much easier.
    You are good at noticing your health limitations and doing something about it. That’s something many of us fight tooth and nail. (Not me personally haha)

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    • I hadn’t thought about the hearing issues, mine isn’t great either. I guess straining to hear all the time could easily add up to another reason to be exhausting. You are totally right about being “on” the whole time, I kept getting lost and them panicking that someone would ask from me to chip in. I thought when I put the time limits to their visits that I was ahead of the situation, but it seems even that wasn’t enough.

      Thanks for the hearing heads up, I am actually doing something about that, but more on that one next time 🙂

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  3. Hello Pam,Happy New Year to you and Adam.I too have the same problem and now I just say talk among yourselves for a while and I’ll get back to you shortly.Those that count know I don’t always sleep well and are happy for me to coast for a while and just listen.

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    • Happy New Year Nancy, I might hold onto that one, it’s just visitors are so rare these days, that I try to make the most of them while they are here. Maybe more often and shorter spells when there are more than two might help. There are so many options, it’s finding the one that works that is so hard. 🙂

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  4. Don’t worry about thinking you are being ‘cruel or nasty’ to family, I’m sure they will understand. As Clint Eastwood said in one of his film’s’ I can’t remember which one (‘Magnum Force’ I think), “A man’s (or in your case a woman) got to know his limitations”. You’ve recognised yours and anyone who cares would understand and appreciate this.Glad to here from you again and a happy new year to you and Adam.

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    • I just felt in need of a break and I thought fewer would worry over the Christmas period than other times of the year. Limits are always hard even when you know them. Getting other to understand, even family should be easy but it isn’t always 🙂

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  5. i am just the same when family or friends call i have simply had more than enough after 45 minutes.i have started to tell them in a nice way that i am just not up to it.if not i am left exhausted beyond words.i am same on the phone too i can only chat for 5 minutes at a time.

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    • Snap on the phone thing, that’s one I have know for a while. If they don’t get the message or stop me from getting off the line, I just tell them I have to get to the loo otherwise, they can come round and clean up the mess. So far, all let me go 🙂

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  6. Gosh, I empathise, Pam. My limit is also three hours and that depends on who and how many. I was never able to get my common-law stepmother to understand that. I would explain it as enjoyment and enthusiasm giving me adrenaline and if that wasn’t present, I simply couldn’t cope. She was angry when I walked out of a play but I found it shit and I couldn’t go on sitting there on an uncomfortable seat. This Christmas was one of the best with my sister-in-law, nieces and nephew. Lasted five hours very happily! Happy New Year! 😀

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    • It’s amazing how we have an issue with the same person. Adams mum took a further 15 minutes to actually leave after being asked to go. As much as I love her, she just doesn’t grasp the issues that I have with never ending visits.

      A Happy New Year to you too 💞

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  7. The trouble is people takes things too personally instead of listening to what is being said. It’s not about them it’s what is endurable for you. Do you think it’s because they have never suffered in any length of time with a debilitating illness such as MS And all the other progressive illnesses? Some people do have a lack of understanding when others are in pain, or suffering in one way or another I personally do think it’s because they haven’t suffered themselves. A new year hug for you Pam (((HUG)))

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    • I totally agree, it is after all something none of us really understood until we found ourselves here. I guess we have to have understanding both ways, but it’s hard to get the balance.

      And of course a New Years hug for you too (((Hugs)))

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    • It’s harder here in the UK, we don’t have the option of Thanksgiving. The visits of my daughter and my husbands family was spaced by a week, but it was still too much for me. Even on the morning of their arrival, I thought I could manage it, but I didn’t realise until too late just how tired I was, nor did I foresee the problem of getting them out the door, once time up was called. Some find saying good bye as an excuse to suddenly talk about all the things they thought that were missed, rather than simply saying good bye 🙂

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  8. Until recent months Icould not have imagined relating to what you have written. I couldn’t imagine that “supportive” friends & family could drain so much. Only a few months ago Ihad a similar realisation; I invited one of my best friends and her son over for an overnight movie night for the kids to catch up. They arrived Friday evening, a simple quiet evening, easy dinner, movie with snacks and bedtime. By the time they left on the Saturday around lunch time I was so drained and had nothing left. I felt awful in wishing them away but I was really struggling, I went back to my bed as soon as they left. Spent the entire Sunday in it and still managed to end up not being able to get my wee one up for school on the monday (we over slept till 9:30am).
    I’ve tried to denied the gradual decline of my health, i’ve tried to fight to be “normal” & to do “normal” things. But the acceptace is slowly coming to me that more frequently some days just can’t be “normal” and that I need to start accepting a slower pace in favour of my health.

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    • It’s hard to accept that just sitting talking can drain you so much, but the fact is, it does. We might love seeing them, but we also love seeing them go. I have learned that from my side at least, short and sweet really looks like the answer. It’s hard especially when they have travelled the length of the country to see you, you just want them to stay, but you just can’t do it.

      They are hard lessons, but we all have to learn them (((Hugs)))

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  9. Happy New Year, Pam! People need to understand your limitations. Excusing yourself to go and rest would have been entirely within your right and a necessity. I’m glad you had such a lovely visit with your daughter!

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    • Happy New Year to you too. Yes I could have left the room, but our bedroom is right next door to our living room, I would have still heard them talking and like most people, not clearly hearing something winds me up. I guess I just have to be more forthright when it comes to how I am feeling and when enough is enough 🙂

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  10. Thanks for being so honest and writing this post. I found too that when I am in my worst flares, company, even if it is ‘just’ family, simply increases not decreases my pain. Doesn’t matter if I’m in the hospital or in bed at home. I stopped hosting about 4 years ago. I can’t take the anticipation let alone the event. I claimed my “enough is enough”. I now attend family event at my own speed on my own time, it a beautiful thing to be able to leave when you feel like it.

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    • If only that option was open to me, but being housebound, there is no other way of seeing people. Hence my wondering if the two person rule, might be the answer. If all that chatter just draining and it hit me at speed, one minute coping, the next totally wishing they would all just go. I feel so ungrateful saying that, as it is totally not meant that way, but that was it, exhaustion at high speed. It’s a hard one to get across politely 🙂

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      • No, you are not being ungrateful at all. This is called life altering self care. If anyone assumes you are simply dismissing their visiting then I’d say cut them from the visiting list! You must do what is best for you health. It’s unfortunate but necessary… you may want to ask your husband to help set up the rule as he was ignoring the allotted time you two had set. ??? You are in a very difficult position. I apologize for overlooking the very real fact that you are housebound. I must apologize for that. -Kim

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