A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.
I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.
A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.
I'll flap my broken wings and erase it all someday... You'll see.
Sunday, 23 March 2014
My medication routine probably takes up more of our time than anything else. I looked back on an old blog which had my old routine, and one thing I can't help but say is how much it has changed over the last few years. It is important that some drugs are given within the right time frame of each other and at the correct intervals. The aim is to maximise the effect, ensure that there is no pain and make sure that my breathing remains steady and easy. It starts every morning as soon as I wake up, usually around 10 or 11. I try and start the meds at 11 if possible because that way I know for sure that I am up and about. This is a typical layout of what I have to take and when. This is a window in to my life and what I have to do every single day, but please note, this is a treatment plan that has been set up by my consultants, GP and other medical professionals who are in charge of my care. This isn't a routine that would work with everyone and should read objectively and in terms of my personal circumstances.
That first peak flow will govern what I will do that day, what meds I need and whether or not we should be on our guard. The scale usually works as so:
Best ever (and what I aim to get) peak flow was 400l/min. -300l/min and above: usually very good and not much by way of symptoms, carry on with inhalers as needed and take maintenance dose of prednisolone 20mg. 250l/min-300l/min: Start being on guard, symptoms will start to manifest themselves. The best thing is to take nebs as needed and try and keep on top of symptoms. 200l/min-250l/min: Symptoms will be getting worse and I may struggle with day to day activity. 4 hourly nebulisers, plus extra Ventolin PRN (as needed) and increase steroids, if no better in a week, seek advice. I seem to be in this range more often than not these days. Below 200l/min: Neb immediately. Usually by this point, I will be really fighting to breathe and won't be very chatty and will be completely apathetic. If things are no better then seek urgent medical care. See a doctor ASAP.
The peak flow helps us to gauge just how my asthma will behave. After I have done nebs (or inhalers) I then check it again to mark any improvement. Before the nebs, I usually like to take my tablets (and Oramorph when I need it). My usual morning routine is:
-20-30mg Prednisolone (oral steroids).
-200mg Sertraline (an SSRI antidepressant).
-225mg Phyllocontin (Aminophylline for my asthma).
-1g/60mg Co-codamol (1g Paracetamol to 60mg codeine, pain medications). I repeat this every 4 hours.
-100mg Tramadol (another strong painkiller). This is repeated every 4 hours.
-10mg Loratadine (antihistamine).
-750mg Carbocisticine (a drug to help me with my respiratory secretions, makes them less sticky and easier to move).
-30mg Lansoprazole (for my reflux problems).
-10mg Buscopan (for my IBS).
-5mg Ventolin (salbutamol) /500mcg Respontin (ipratropium) nebulisers OR 2 puffs of Ventolin and 2 puffs if Atrovent inhalers, (depends on peak flow).
-2 puffs of Symbicort (preventer/protector inhaler).
-5mg/2.5ml Oral morphine. (For the days when the pain is THAT bad, I can have this dose every 3 hours or I can have 3 big doses of 10mg/5ml, but we were told that it was probably preferable to me to do it every 3 hours instead of every 6, keeping a constant stream of the drug in my system which ultimately means that the pain relief is constant.
This is my morning "cocktail" and is sometimes added to with antibiotics if they're needed and Alendronic Acid (for my bones) on a Wednesday. Things like the Co-codamol, Tramadol and nebs are repeated every 4 hours (although I can have Ventolin nebs between times if I need them) whereas the Carbocisticine is repeated in 6 hours, the morphine every 3 hours and antibiotics as prescribed (usually I take the middle dose with the Carbocisticine) as well as my "As Required" drugs like Lorazepam (I have up to 3 of those a day) for the stiffness in my muscles around my airways and stiff, sticky lungs. I do wonder sometimes about how much harm this lot can do to the body and worry that I could be doing myself harm but the alternative is not even worth thinking about.
Once the tablets are all done and between topping them up I try and do as much as I can and is possible, whether it's a wander up to the shops or a roll up to town. I try and make the best of my days and enjoy myself in doing so. Besides, what is the point in allowing yourself to be sat around feeling miserable all day? Between us, my carer and I have set up routines and I do try and keep to them as best as we can. The best part of having a friend as a carer is that we can understand each other but still maintain some level of distance in that we aren't overly emotionally involved with each other and the other's lives. Don't get me wrong, Natt and I are very fond of each other and we are like brother and sister, but we do have our boundaries. I get him to help me with some of my drugs, such as the morphine, because some of them could be catastrophic if given wrongly and it is better to have 2 pairs of eyes on the syringe as I draw it out and before I take it to verify amounts.
My night routine usually starts about 11pm. It's in this time that I start getting ready for bed and sort out my tablets and nebs to allow for a peaceful sleep. Sleep is important for me to recover from attacks and whatever the day has thrown at me. Before bed, I have to take another peak flow and record it. I take them periodically through the day as well and note any significant changes. It's important to keep a good record of my peak flow because it allows my team to know what has been going on by clinical data rather than subjective data such as how I feel.I tend to mark in one colour what I started at, and in another what I got after my treatment. This is good because we can see how well my treatment works. If it wasn't working for me, then we would have to reconsider what I was on and make the appropriate changes. Also having this can help us tell when a serious attack could be looming over my shoulders. Usually you can really tell when it's about to happen by peak flow readings and how I have generally been. Usually when my peak flow has really dropped, I tend to be really symptomatic and generally not that happy with myself. I tend to hide away and not want to be around people when I don't feel well. My night meds are done after the peak flow and I put them in my little plastic cup ready for me to take:
-20mg Amitriptyline (for the arthritis and to help with pain caused by the nerves).
-200mg Quetiapine (an antipsychotic).
-50mg Hydroxizine (general allergies).
-20mg Bambuterol (turns to another drug in the system, for asthma).
-10mg Montelukast (another asthma medicine).
-20mg Buscopan (for my IBS).
-1mg Lorazepam (helps me sleep and relaxes my muscles).
-5mg/500mcg Ventolin/Respontin nebulisers.
-10mg/5ml Oral morphine.
Usually after this horrible lot, I am ready to just curl up and go to sleep, ready for the next day to start and the routine to begin anew. It probably won't surprise you to know that I do sleep like a log and save waking every so often for medication or to bring up the thick gunk out of my chest, I do feel rested the next day.Its not a fun regime and it is time consuming, having to measure out meds or give them at exactly the right times. But to someone like me, this is what life is like. So I hope this has given you some insight as to what treatments I get for my asthma and other conditions (because there are plenty of them to keep me busy) and some insight in to something important that keeps me alive and ready to fight another day.