My Fickle Friend (Lupus Awareness Month: Days 7, 8 and 9)

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E IS FOR ENERGY (LACK OF), F IS FOR FATIGUE AND G IS FOR GOSH I AM TIRED!

sleep-important

 Whoops! I have been remiss so here is  a 3 in 1 post. Well that worked out well, anyone would think I had planned it! So what can I tell you about Lupus and fatigue?

Fatigue is one symptom that people with Lupus have to learn to live with. My consultant refers to this in his notes as TATT (tired all the time). As acronyms go it is reasonably apt. Let me try to explain this fatigue…

  • if you have had children you may remember the tired that washes over you in mid pregnancy- well it is worse than that
  • it is tiredness that reaches your fingertips so that even moving a finger is too much effort
  • it is tiredness that means if you get up and go to the toilet you are finished for the rest of the day
  • it is tiredness that makes you feel sick and as if every pore and every cell is about to combust!
  • it is tiredness that is so consuming you can’t settle or rest or get comfortable
  • it is tiredness that a good sleep does not fix
  • it is tiredness that means washing your hair makes your arms hurt

 I could go on but hopefully you have the picture; many of you will relate to feeling one or maybe more of the above on occasion but if you have Lupus this is a daily experience. The trick is learning to live with it and managing it so that one does not evolve into an amoeba like structure that only moves slowly and with no vigour.

It is a riddle of a problem which can only be handled with a fine balance of medication and a heap load of will power and determination. The pain of Lupus often prevents restorative sleep and for me getting this sorted has been the key. Having ‘enough’ energy on occasion and using it to exercise moderately contributes to a better sense of well being . All this is only possible when the Lupus is under control and NOT when in a flare. Oh yes, F is also for flare. I expect I will talk about that tomorrow then! So much for planning. But having Lupus teaches you that you have to be adaptable and flexible because you never know what each day will bring. Lupus is a fickle friend.

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Author: onoodlesstitchcraft

An erstwhile teacher who has taken a new path due to illness and returned to an earlier existence exploring her artistic and creative skills of stitchcraft. My oldest son laughs and says I am as mad as a spoon, qualifying the comment that I am not like other middle aged mothers... well hurrah for that! So what do I do? I love to cook, I am never without a craft project or a few on the go, I love my garden, walking, nature and the environment. I am a magpie for vintage patterns and love colour. I get pleasure from creating and giving to friends. I have a rabbit! I ride a bike and recycle... Drink too much tea and like nothing better than to lunch with friends. Snuggling up on cold winter nights is essential. I like the theatre; musicals and dance in particular. Amongst my favourite films are Seven Brides for Seven Brothers, Singing in the Rain and Fried Green Tomatoes. I love to read anything from Crime thrillers to classics (love Wuthering Heights) or biographies about inspirational people. I hate sexism or racism and disingenuous people. I value friendship and above all else my family.

4 thoughts on “My Fickle Friend (Lupus Awareness Month: Days 7, 8 and 9)

  1. Jeepers, Jill, you really have your work cut out for you, trying to keep on top of this illness. I am even more impressed with your creative work, you seem to be so busy with it but it must be difficult prioritising things when you DO have some energy. You sound like a strong and resilient woman!!! I’m so sorry that you have to endure this.

  2. I have learnt to take a day at a time and having given up my extremely stressful job as an Assistant Head teacher I have been able to change my life for the better. This is the reason I have time to create! Silver linings and all that! As for lack of energy, I have also got a handle on dealing with that and currently am as well as possible so am able to do much more than when the disease is active. Therefore I am trying to ditch some weight and get back to being fit ‘cos you can bet that when a flare hits it will be back on the steroids and piling on the pounds. Yes I am pretty strong and resilient but the cracks do show at times! Plus I am uber lucky to have a brilliant husband and amazing sons and some extremely supportive friends. Oh sorry this is beginning to sound like a diatribe! Thank you for reading and thank you for caring 🙂 How many animal hats to go?

  3. This is my worst one…Having three kids and coming from a very active lifestyle to NOTHING! I hate not being able to go to the bathroom because I know once I do I am in bed the rest of the day. I have good days and bad but when I have bad ones it lasts for weeks…

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