Day to day living with Sickle Cell

I would like to take you through day to day living with Sickle Cell.

There are 3 angles to think from. with sickle cell, you are mostly in one of these 3 states at all times, being:

'well',
'manageable' and
'crisis'.

Firstly, i'll take you through what it's like, with:

Its 'normal' - when not in a crisis state, you're able to do and live just as most people are able to. it's actually a blessing not to have to go through any pains. things can't be this good, can they?! :)

Well yes they are, yes they can be.

During this time all the 'normal' elements of life can take place, work, relations, traveling, driving, socialising: the list goes on...

Living a stress-free life is very important, as stress and anticipation can bring on a crisis too. The body is very much controlled by the brain, even when it comes to bringing on a crisis, it does and has happened...

A life living with Sickle Cell is one of 'constant' therapy - I mean we use the body all the time, so it needs to be looked after and nutured. Just as a car needs petrol, your body needs fuel, mot, and the ocassional visit to the garage (hospital) - a car is designed off of the body anyways, but we digress...

So you must eat well, drink well and sleep well, not over exerting or causing unnecessary hardship to the body, also remembering to take any medications which you feel are beneficial and are doing something good for the body...

That sums up (for me) day to day living with Sickle Cell - regular living.

Manageable

There is an element of SCA when you are constantly 'in the balance' regarding your health. At this time you're constantly feeling unwell - not unwell enough to go into hospital, but that you'd just need to stay indoors for a while or just take it easy (i.e. come straight home from school / work and rest straight away).

At this time you pretty much feel the 'anaemia' side of the illness. you can usually notice that me/the person with Sickle Cell is slower, tired, sluggish or in some form of pain, It can go on for weeks, requiring pain killers to help with pains, though they're not really dealing with the problem. Visits to the Drs never reveal much over the time, xrays never usually detect much either, blood tests just tell the medical staff that 'they're eyes are telling them the truth' and that you are unwell :) umm, yea that's why i'm here you know... anyway this stage is manageable, though not too good.

Sometimes there's a hint of jaundice in the eyes. Jaundice is an indication that the body is unable to cope with the rate at which red blood cells are being broken down within the body. the bi-product of the eradication of dead cells is bilirubin, which has a yellow pigment. If the body (liver) is unable to contain it within internal organs and excrete it as usual, then any excess will be stored in organs, and signs of this can be seen in the eyes... Red blood cells with someone with Sickle Cell live 1-20 days (normally red blood cells last >120 days), so the body is under more pressure to ensure there are healthy cells available...

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NOW the processes can sometimes be reversed, sometimes it's too late but sometimes you can help yourself... The process can be a 'natural' process, allowing your body time to heal and repair itself, extract the poisons from the body and blood. This is a tiring process, sometimes taking a week or two. Sometimes all being well you can be back to 'normal' in 3 days or so, though you would still be a little weaker.

The processes for helping yourself out of an 'impending' crisis can be:

- water and herbal teas (lots of it)
- usually very little foods over the time: i usually lose weight whilst recovering
- resting and sleeping, not doing too much and possibly staying in bed for most of the time
- pain medication and ointments / rubs / hot water bottle
- showers and baths, when circumstances permit (water therapy)
- a visit to the Drs to get another type of medication which may help with the symptoms a bit better than previous medicines (western medicine takes a symptomatic approach to healing, rather than a causal approach...)

Sometimes it is possible to stave off an episode and avoid going into hospital. hospital is the LAST place you wish to go to, dealing with the stresses of hospital and having to comply with the rules and the food!

During this stage it's usually quite painful. You don't want to do too much and you don't really want to be out or be around people. This is a time when you feel a crisis is impending...

Many a time I've been home having a 'manageable' episode, spend hours tossing and turning in pain, and because of the pain, not be able to sleep at :) Does pain increase at night time? YES - have you noticed it with yourself? For this reason it's difficult to sleep at nights.

Sometimes I'm then able to go and do something else, make a tea, read (rare), or just stay awake in bed - thinking what it'd be like to be asleep right now... :)

SO this is pretty much a Stage 2, though it can easily lead into:

Crisis

The time you've been dreading, when the pain gets too much and leads into a 'crisis' situation. At this stage you will be going through a tremendous amount of pain. No pain medication that you have available to you will work, or for long enough, and they will barely take the 'edge' off the pain.

A trip to the hospital is necessary, which will always involve

Multiple attempts at canulation, to administer saline, IV antibiotics and stronger medication
Various tests, including Xrays (which hardly ever reveal anything), blood pressure, temperature, saturations tests (oxygen levels)
Constant interruption, noise, smells, food, etc...

Being in hospital will take around 7 days to recooperate. The normal procedure for when in hospital is:

fluid,
analgesics,
antibiotics and
bed rest

And these are the proceses by which you will get better. To 'treat' the symptoms of a Sickle Cell crisis is the usual method of supporting the person through a crisis. This takes a peaceful environment, understanding nurses and health professionals, and supportive family and friends. The healing process can be helped along if you are in a conducive environment for healing.