The Current situation.
It’s been a while since my last post. Things haven’t been
going well! I wanted to wait until I knew more before putting it out there.
It’s
going to be quite a long one so keep with me if you have the time.…
In April I lost my job.
It by far made my current condition a
lot worse.
As I have bills to pay and suddenly had no form of income. I worked
and batted with my health for a whole year with the crohns and my other
problems.
But in the end I lost my job over a nasty bout of tonsillitis. It wasn’t
my choice, I would probably still be pushing on with working. But after months
and months of illness, the recurring tonsillitis was clearly the final straw.
Understanding when you have a business to run. I’m not exactly the perfect
employee due to my health! But that is out of my control. I work very hard when
I’m well enough and will go above and beyond.
The following weeks led to what I
would class as a flare but my blood work says otherwise. This seems to happen
often, in that my blood work is spot on but my symptoms are terrible!
So, here I am, unemployed and in a current state of health
which leaves me completely unemployable. My task is now to get myself well
enough to become employable once again.
My medication was withheld due to all the infections I was
getting as it effected my immune system too greatly. This means I now haven’t had
any Crohn’s medication for 6 months. Luckily the medicine is designed to last
that amount of time but the dosage will gradually wear off and symptoms creep back in. I’m now just a few
weeks of finally getting another dose. Thank goodness.
I have a diary which I fill in for the hospital every day. It
asks how many times I’ve been to the toilet, abdominal pain rating, generally
wellness rating, temperature and any medication taken that day.
Its gone from being a once or twice a day to the loo with
minimal pain and feeling good with no additional medicine to going to the loo
5-15 times a day…. Yes up to 15 times… It’s exhausting. And having to take additional medicine more and more.
I’ve been getting ill
in the night again. Usually around 3am I wake up with the immense urgency and
have to literally leg it to the loo. I will then yo-yo to and from the bathroom
up to 4 times in an hour feeling sick, shaking, dizzy and weak. Before taking
anti-sickness and pain medication and waiting for them to send me off to sleep
again. This can happen 4 nights in a row at times. But every so often I will go
a week without a night episode but I can absolutely guarantee it will happen
again.
My quality of sleep is poor to say the least. It’s really
bad but I rely on my migraine medication, Amitriptyline to get me to sleep. Without
it I will be lying awake literally all night. I will then sleep for up to
14hours and wake up with a medication ‘hangover’.
Upon waking I am achy all over, hurting from head to toe. I
have to then go and sit down on the sofa for a good hour before I have ‘loosened’
up enough to be able to function semi-normally.
Some days the pain doesn’t ease and I feel like I’ve been bulldozed
all day long.
To the point I need help with getting showered and dressed. And also help getting up the stairs and getting to bed. There are times I can’t hold a kettle due to the pain and can’t even brush my own hair. And days when I’m simply not safe enough to drive.
To the point I need help with getting showered and dressed. And also help getting up the stairs and getting to bed. There are times I can’t hold a kettle due to the pain and can’t even brush my own hair. And days when I’m simply not safe enough to drive.
For a 24 year old woman, having to rely on
someone to help you do normal things knocks you big time. I can’t even describe
what the pain feels like. It has me rolling around in tears at times because there’s
no let up. My boyfriend has even had to come home from a nightshift for
15mintues to help get me to bed. Thank goodness I have him. Id be so lost without him.
And believe me you don’t know fatigue until you have to rest
before AND after taking a shower.
Going to get a shower is a normal daily task. But for me,
this daily chore is draining. Washing myself, drying myself, drying my hair,
styling my hair, make up and then getting dressed. I sit on the bed after a
shower every day mustering up the energy and strength to get ready. God help me
if I have an appointment or a time to get ready by.
I don’t understand how I managed to work full time and keep
on top of all the house work and other daily tasks and do it for so long. When I
wake up these days I have to weigh up important tasks and less important and
spread it over a few days. When I hoover, I do upstairs one day and downstairs
the next. Both on one day is out of the question.
If your still reading this, and you’re not someone with a
chronic illness. Please do not take for granted being able to get up at 7am and
still be able to function and not be in agony by 10pm. And going on holiday and going for days out
every day…. You don’t know how lucky you are.
Following all of this and more which I haven’t gone into, I decided
enough was enough. My crohns is always under treatment but the rest of me is
struggling and has been for years! I went to the doctor and she listened and referred me to a
Rheumatologist.
I have now been diagnosed with Fibromyalgia which is a
chronic wide spread pain condition. It is diagnosed by pain points on your
body. 18 pain points. 11 or more is a firm diagnosis…. I scored 18 out of 18. Head
to toe wide spread pain in the muscles, tendons and ligaments.
Explains a lot….
I was also diagnosed as Hypermobile. I scored 5 out of 9 on
the Beighton scale. Which is how it is measured. I don’t have it severely but
enough to cause me daily symptoms and pain. Also linked to the Fibromyalgia.
With increased flexibility you are also more susceptible to dislocation. As the joints aren’t supported as well as in a normal healthy person.
With increased flexibility you are also more susceptible to dislocation. As the joints aren’t supported as well as in a normal healthy person.
I was told I have dislocated my left knee in the past. I had
no idea. But with this condition it isn’t like a normal dislocation where your
joint is ripped out of place. It just kind of pops out as it isn’t held in properly.
I know someone with it who can pop their hip out on command... although it is hugely entertaining and makes us laugh at how freakishly bendy we are, it also isn't good!
I know someone with it who can pop their hip out on command... although it is hugely entertaining and makes us laugh at how freakishly bendy we are, it also isn't good!
I was told to take codeine for pain… But any one with crohn’s
knows that this is BAD. So I'm stuck in a vicious circle. I’m in pain,
so I take codeine… and then my crohn’s flares because of it.
I am still learning about my 2 new conditions. But I only
have them, because I have crohns.
I literally can’t win.