Fraud

[adrian_holland]

Does anyone else ever feel like they are being a fraud?

I have to say over the many years that I have been afflicted with whatever it is that I have, I have occasionally (often just as I have been recovering from a flare) thought that it was me making the most of whatever I was suffering at the time and just to get on with life. This time though my illness has over the last 3 months had many peaks and troughs, some days I have several in a day to the point that I seldom know if I am making a recovery or just having some respite before the next wave takes over me.

After several days last week when I felt terrible, the last couple of days, in the main, and in myself I haven't been feeling all that bad. Yes I have been wracked with lots of joint and abdo pain but generally the depression that has had me gripped for a few weeks had started to lift, to the point that if I was asked if I felt upto a fazed return to work, then my honest answer would be yes, and yes I have been feeling like a bit of a fraud for a couple of days now. Now don't get me wrong this adversary has been with me for long enough for me to know better, for me to know that my current brightness could easily be caused by the simple fact that my plight has ben given a label and I have been provided with the motivation to investigate and (mainly through this site) find myself some support, so for now, I will hold fire, at least until I get to sit down with my brand new GP.

My partner and I are about to move house, and yesterday decided to buy a shiny new power washer and, between us de-weed the drive on our current house. Yesterday afternoon between us we managed to clear about 10 sq.yds, leaving about double that to still be done. After the task I was a wasted man and a bath and some food saw the last of my energy drain from me and I spent the rest of the evening slumped on the couch, not knowing where I hurt the most..............................Perhaps I should have heeded the warnings.

But oh no, not I.

Even though I couldn't sleep last night because of the thumping in my head and chest, and the pins & needles in both my hands and feet, and as per usual my right groin had become immovably locked, with the added bonus that my left groin had decided to join the party and play the same game, that I had to lay there most of the night on my back, legs akimbo, all to the end that I only managed about an hour of shut-eye. At 8am, up I bounded (which more took the form of a prolonged painful roll onto the floor and an even more (than usual) painful scrabbling with furniture until I was (something like) upright. Bye 9:30 the kit was out on the drive and I set about my task with as much gusto as I could muster. Even though about halfway through the imaginary elastic bands that stretch themselves across the outside of my ankles were stretched to breaking point and had rendered my feet two immobile stumps over which the best I could manage was a shuffle, even though I had to complete the task using both hands on the trigger of the lance as my thumbs could no longer grip through both pain and weakness. I just kept turning and smiling my reassurance to my partner that I was ok, just a bit weary from the previous day. Never the less 2 hours later the job was done and I crawled on all 4's up to a pre-prepared bath. I thought that I struggled to get in...................but getting out took me about a quarter hour, I had no strength left in my arms or legs, not even enough to fold them under me to offer any kind of support.

So here I now am. A shell of a man. The grim reaper has once again smashed me in my left temple with an iron bar and the pain almost blinds my left eye as it curses from behind my ear across my temple into the front and over the top of my crust, the cold finger is (for the first time in a while) actually hurting, my every joint is screaming at me, I have rheumatic pains surging from my inner wrists right up to my armpits and I feel like whoever plunged the knife into my lower left side, is sat there twisting it. I don't even recall seeing the sun and yet the rash on the back of my neck and forearms has raised into blisters, most of which have burst and I recognise the onset of the complexion of a crocodile only it seems much earlier this year!!!

There is a name for that which I am so obviously afflicted, one that I have yet to see on here (or anywhere else for that matter)....................................Over Ambitious Pillockitis!!!!!

[donna]

Thank you for you intertwining account of how all Lupy people behave! ( today is another bed/sofa day) No you are not a fraud! Just someone struggling to do the normal things that other people take for granted! This pacing game is no joke! Your brain gets stuck in to the job in hand the body tags along for the ride ..flags to early ,the brain says come on hurry up we only have .......... More to do we can do it ! Ok the tired body says ...then they both turn together and hit a ****** huge wall that they both spend the next week !month ,.... Climbing over ....it becomes all consuming to get over or around it ..EVERYTHING and everyone we know suffers because of it .... We're laid up ...we feel brighter ....then off we go again! Pillock your certainly not.....Human yes...I wish you a very speedy recovery period!

Best wishes

[Maresy]

Donna knows, I know, and so many others know what it's like to have to live in the normal world when you feel anything but normal. Esp. if you have a partner. Or kids. Or a job you have to try and get to so you don't lose it. It's exhausting trying to fake it like I had to do this last Saturday, to go to a niece's birthday party when all I wanted to do was hunker down in bed with an achy body and splitting headache. But my husband's family thinks I am a snob, & uninterested in them, & no one has ever been ill with anything like lupus so they don't understand at all. They don't get that forcing myself to hold down a full time job renders me good for little else than rest on my blessed weekends off. So you go through life trying to have fun with others, or trying to "act" like everything's okay. And sometimes, for an hour here and there, you actually start to believe your lie. That you are, in fact, well, and feeling just dandy like everybody else.

Only you're not. You're a faker. Because you have to be.

[Natura]

Adrian....so sorry for your pain. I too did too much this past sat with my husband...all day running around. Picking up branches in yard from a limb my husband took down..laying down grass seed, bringing branches up to the dump, taking a bike ride with my daughter, buying small trees to put in yard to make it all look nice. Don't get me wrong. I use to love yard work. I grew up with it, and love to beautify my life. That night I crashed with a sore throat and felt a cold coming on. I nearly didn't make it past 8, but forced myself to stay up to spend time with my family. My mind is all there,but my body isnt. I feel your pain. It's very frustrating, the next day I did hardly anything. I did manage to cook dinner for the family. I am fortunate in that I am not working now and can rest, but i am sorry that you have to get through your week ill. I am starting to wonder if hiring a yard person is going to be in my future. Lucky my husband is still strong, but he has a torn shoulder muscle that is not surgical repairable. I worry for both of us. Hope that you find an alternative to help you with your chores that are getting very hard for you. Take care of yourself...

[lupus-support1 Administrator]

I think this is probably the most common feeling, along with feeling alone. There is an automatic comparison between what we used to do/or what we want to do and what we physically are able to do . . often at a considerable cost to ourselves. When we push ourselves to do more, there are consequences: fatigue, pain and frequently feeling guilty or ashamed for something that is not our fault. Frequently, we look OK and this seems to make our situation harder to bear because few people seem to understand. This is why psychological support is not a luxury but a necessity

Be well!

Ros

[Atibrat Moderator LUPUS SUPPORT in reply to lupus-support1]

Ros I always here a body in motion stays in motion. My body is proof that is not true. I know exercise is important but when our bodies are not up to it and we try to push them they do not pay us back with more motion. At least I have learned mine does not anymore. I so wish are there people could understand this disease that is a very frustrating part.

[Whathappned]

Hi Adrian

I'm off in to the garden! I'm going to do some tidying of a corner that's driven me mad for 6 months. I eventually feel up to it and the weathers good too. The problem is will I have enough energy ( as someone else mentioned on another post - I'm not sure how many spoons I'm allocated today)? I'm going to take the risk as I need to test myself. I've been of sick, mainly due to fog so i need to do some physical work then I've some paperwork to sort. I need to check I am ok because I said i would go back friday. If I can do the paperwork, I'm sorted!

I'm going to weed and move a few plant pots around and sort out the brick patio I laid years ago. When I look back at what I used to get done, to what I do now, I can't believe the difference. I dug the area out, levelled it, compacted it and laid all these old house bricks in a couple of days and now I am just weeding and ill probably sit most of the time! My hubby does NOT garden, although he cuts the lawn. It's always been my job so it looks awful these days.

I'm off work because I was unsafe due to fog and initially fatigued. I see getting out in the garden and doing this as therapeutic in itself. The problem is, i feel if I can do this I should be at work. I know really, that if I don't stop and take this sick leave then I will be off and for a lot longer. But I feel stupid when I try to explain. I look perfectly well today. I looked perfectly well on the first sick day , except the frown marks in my forehead that deepen as I struggle. Yes, I definitely understand as I spend life thinking people must think I'm a fraud.

Take care x

[sylviaweller_79]

I have had my fair share of sofa days. I felt like a fraud, I felt like I was being lazy, but I hurt everywhere and didn't have the energy to get up. Your no fraud. Focus on the good days and stay positive. I hope you feel better soon

[Atibrat Moderator LUPUS SUPPORT]

I remember when I tried to work full time and could not imagine being off work. Now I have not worked for some time and it is still hard to get anything done.the help of a herniated disc in my neck got me to the point of being off work completely. I would give anything for my old life back. I have to laugh at the explanation of how we move especially when we first get up. I can't believe there are really other people that walk like a crab and grab on to things to get across the room. I remember when I took a shower with no thought about it. Now it take so long to get my body to do the simplest of things.it has become a very lonely and painful existence. but often you have to step back and look at the humor of the whole thing. I prefer to laugh then to cry.