Tag Archives: chronic fatigue syndrome

Alive and Kicking With a Limp

 

If you want to know a little bit about me I’ve written an interesting article over on Squidoo. The article is called  Alive and Kicking with a Limp: All About Me and discusses basically who I am. It was part of a Rocket-Squids challenge and it has been a huge success.

 

I talk about my disease (Heterozygous Factor V Leiden Mutation) and conditions (Chronic Fatigue Syndrome) but that’s not all there is to me. I love to practice karate, read, write and research, but I also love music.

If you want to find out some more information on my then follow the Alive and Kicking with a Limp: All About Me link and tell me what you think.

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How Do I Survive

It dawned on me the other day that without my medications I would probably be dead. Simple as that: dead. When you think about it it’s a scary thought, the fact that I have to go about this daily routine administering different medications at different times just to stop my body from destroying itself. My body may not want to live but my mind sure as hell does, there’s a whole bunch of stuff I’ve yet to do before I die.

I thought I’d write a post on all of the medication that I have to take in a single day. I can only assume that there are others in a similar situation to me who are looking for some support or some information on any of these diseases.

Tramadol

I use this medication to help me control the pain in my leg, muscles and joints. It’s a bit of a party popper as I have to avoid alcohol with it. Although I have discovered that I can have a small drink with it if I’m having a good pain day and don’t need my full dosage. Just be very careful if you’re going to do this, it says to avoid alcohol for a reason, mainly because the combination of the full dosage and alcohol can slow your breathing making it very dangerous for you.

Clexane (Enoxaparin Sodium)

This little beast is my main life saver at the moment. I have to take this 100mg injection every 12 hours to keep my platelets down, thin my blood and keep this animal of a clot in place (it’s at least 3ft long and living in my left leg and tummy). Here are a couple of articles I have written on Clexane:

Seretide and Ventolin

Just like the Clexane I have to take a steroid inhaler every 12 hours to keep my asthma at bay and the ventolin I take as and when as a reliever. I’ve had these inhalers for quite a while now and they don’t really bother me anymore, they have become part of my morning and evening routine and that’s that.

Green Tea

I’ve started taking a green tea capsule in the morning to help give me a natural energy boost. I’ve found that it really helps kick the morning brain fog in the booty. I’ve written an in-depth Squidoo Lens on the Benefits of Green Tea for Chronic Fatigue Patients if you want to find out more.

Probiotic Yoghurt

These crazy little bacteria help to keep my bloat and IBS at bay. I haven’t really done much research on these little blighters (it’s on my to-do list) but I know they work and keep me comfortable.

Arnica

I’ve yet to write a full blown article on my love affair with arnica but it has done wonders for my post-thrombotic syndrome and helps to also get rid of bruising and any hematomathat crop up from my injections. You can buy some Arnica cream from Amazon so you can keep it on hand for any knocks and bumps.

Crutches

I uses these daily to help me get around. I can only walk a couple of paces without holding onto something and I can only do that inside. When I first came out of hospital I was on my own rehab program so that I could get fit enough to go back to work (we all need money right) and that involved me doing some time on an exercise bike and some upper body work so that I could use the crutches effectively. That rehab has now stopped because I get my “exercise” from work – trust me on this one by the time I’ve got to work I’m knackered, it’s hard work walking with a massive limp and dud leg.
Unfortunately the situation that I’m in at the moment means that I can’t participate in my beloved karate, I can only sit and watch. It also means that until this clot has stabilized or gotten smaller I can’t do any more rehab otherwise I risk breaking the clot and dying.

IVC Filter

I had this bad boy fitted when I was hospitalized. Basically, all it does is sit in the big vein that runs down the middle of the torso and stop any blood clots from reaching my lungs, brain or heart. It’s my biggest life saver (aside the Clexane) and acts as a warning signal that a clot has broken off (I’ll get chest pain and limb swelling) and that it’s time to dial for an ambulance. I have to get it checked out every 6 months just to make sure it’s ok and not moved or anything.

Foots Stools

I have these pretty much everywhere I go. I even have one in the car for if I’m out and about and need to stick my leg up. The foot stools help with the Venous Insufficiency – where the valves are now busted in the main vein blood will pool in the bottom of my leg so by having my leg up where ever possible I can let gravity take the blood to my hip where the unbroken veins will take over.

Warfarin

I haven’t started this medication yet but I will do once my blood work is stable. I will eventually be on this medication for the rest of my life to keep my blood thin and

Right, I’m fairly sure those are all the medications that I’m on or due to go on. If you have any questions or thoughts on these then by all means leave me a comment.

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Healthy Living With An Illness

If you’ve ever been poorly for any length then you’ll begin to understand what it is like to live like that every single day of your life. Just so that you know what I’m talking about I’ll give you a quick run down on what I’ve finally been diagnosed with after all these years of searching.

Heterozygous Factor V Leiden

I know, it’s a bit of a mouthful to say and it’s certainly more than a handful to live with. Basically what that means for me is that my body cannot break down clots which has lead to an extensive Deep Vein Thrombosis in my left leg. I have to take twice daily heparin injections to stay alive but I’ve written a separate post explaining exactly what Factor V is so if you want to you can check it out here.

Deep Vein Thrombosis (DVT)

This is a complication of my Factor V Leiden disease and has recently landed me in hospital for a month and home care for an extra 3. A deep vein thrombosis is a clot that gets stuck in the largest vein in  your lower body, normally found in the calf. There are many risk factors for getting a DVT and it is wise to be aware of them as they can cause further complications such as Venous Insufficiency and Post-Thrombotic Syndrome.

Venous Insufficiency

Venous insufficiency occurs when there has been damage to the valves in the veins. If the valves don’t work in a vein then blood will pool in the lower extremities and can cause a whole host of nasty complications such as ulcers on the skin, swelling, and pain. Here is a previous article that goes into detail if you want to find out more.

Post-Thrombotic Syndrome

I must say, this complication is not fun (most complications never are). It is a condition that at least 50% of DVT patients will suffer from and there is currently no cure. Symptoms include pain, swelling and fatigue with more information to be found here.

Asthma

This particular condition I have had since I was a child, however, since my hospitalization it has gotten worse because I had a few pulmonary embolisms (clots that went to my lungs). I am currently on twice daily steroids and an inhaler when I need it. Asthma is caused by irritants making the windpipe contract making it difficult to breathe but the steroids help to calm down the reaction.

Chronic Fatigue Sydrome

Now, this is an interesting one, I’m on the fence as to whether I actually have this or not but either way the treatment is the same. Basically, I don’t know whether my fatigue is caused by my blood disease or whether it’s because I’ve got CFS. I wont really know until my blood is under control which might take a couple of years to do. Anyway, here are a couple of links about Chronic Fatigue Syndrome, what it is, and what it’s like to live with it.

 I also have two things that I couldn’t live without at the moment:

  • Arnica
    to help take away the bruising and soreness from my injections.

There you have it, my reasons for trying to live a health life with a handful of chronic illnesses. I admit I’m not good everyday but I always try and do better than the day before. I hope you enjoy reading this on my journey towards a healthier me.

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Filed under Chronic Fatigue Syndrome, Deep Vein Thrombosis, Heterozygous Factor V Leiden, Medicines