I have been working on some new posts from my hospital bed and at the moment all the signs are pointing to doing some stuff on the shock of diagnosis. I received an email this week from a new Mum who had recently had her beautiful 4 week old baby diagnosed with CF. As you can imagine, the heartbreak can be overwhelming.

I had a good chat with my own Mum about my diagnosis and how she got through life after hearing those words. Mum has started recording her experiences so that we can do a series for Mum’s who are living through the trauma of a serious health diagnosis for their child. Obviously I have never had a child and have not gone through this experience so I am not well placed myself to be able to share my experience on that matter so I will leave that to my Mum. I am, however, well placed on having had a mother who has battled through a diagnosis and aimed to create a happy and positive child no matter what. I HONESTLY believe that a mother (and father) who guides her child to be a positive and happy person despite their problems is one of the BEST tools a mother can give her child. There is now good medical evidence that shows that a patient with a positive attitude is more equipped to better deal with their health issues than those who don’t have such an attitude. Creating a positive attitude in a child starts with the parents. So I will share with you the words that I shared with this Mum who reached out to me…..

I can only imagine how you are feeling at the moment. I am on the other side of the spectrum, I have never had to go through the sadness of having your beautiful little one being given what feels like a death sentence. It must be heartbreaking. I know the day I was given the diagnosis still haunts my Mum. You have to know that you will get used to the idea of CF, you will have some happiness again, you will be able to create beautiful memories. You will laugh again. There are a few things that you need to know now that will make a difference to both your life and the life of your little angel.

I know you are VERY angry and scared. It is totally natural. And you shouldn’t beat yourself up for feeling like that. You have a right to be angry. But you also need to understand that this is NOT your fault. This is not caused by anything you have “done”. At this time you need to just take one day at a time. When you feel angry, you need to just allow yourself to be angry for that moment. If you just give it it’s place, rather than trying to deny it and force it away then it will lose its hold on you much faster. It is the same with sadness and grief. Just be in the moment, say to yourself, “yes, I am sad right this moment but I will be OK”. Don’t beat yourself up for feeling these feelings; grief, sadness, anger, just acknowledge that you are feeling them, let them have their moment and then keep going. Do something to break the thought. Preferably something positive, something small like making a cup of tea, putting on a song that always makes your happy no matter what, etc. I know it sounds stupid but you will feel happiness again one day. This initial deep sadness and grief will ease somewhat. It is about giving grief and sadness its place while aiming for a positive outlook.

There will always be a some sadness. That is the nature of illness. But the best thing my mother could have EVER done for me is to teach me to be a positive person. It has been the best tool in my fight against CF. When you are sad remind yourself that you are going to be a positive role model for your son, you will show him how to be a positive and happy person no matter what his circumstances. That is honestly the best tool that you can give your son for the future. It takes practice and it is about changing your thought patterns and attitudes but it is TOTALLY possible. You are the best person to teach your son that life is worth living and that you can find joy and happiness in the smallest things. I know you won’t feel like it is possible at this time but it will happen.

As someone living with Chronic Illness, I know that the above information applies whether you are living with Illness yourself or whether you have a loved one or child who has just been diagnosed. It takes time to get used to your new reality but you will smile again.

Mum has written the first half of her post so I will post that very soon. There has been a bit of a delay between posts due to my being back in hospital. I am just in for a much needed tune up and am looking forward to getting out of here very soon. Until then, I am having fun doing some writing for TLWC and I am looking forward to sharing these stories and insights with you!

See you soon!

Lx.

For more information about TLWC check out the first TLWC post or the ABOUT page.

Finally! Here is the final part of the Medical Workbook series. I have been using my Medical Workbook this week quite abit actually, a bout of Whooping Cough has hit some members of my family and I have used my MW to look up immunisation/booster shot information as well as my medical history (I had Whooping Cough when I was 15). As always, having this information at my fingertips makes managing a stressful situation much easier. In this final part of the Medical Workbook we will look at keeping a record of your Medical History as well as an Admission/Clinic Outcome Journal.

Medical History

A well recorded Medical History is a very usual tool for people who have multiple health issues and any number of other complications. It is never too late to start a Medical History. A good way to start one is to roughly list the year that you first experienced any health problems and the details of that problem and then work your way back from there, giving a rough yearly outline. You will forgot things, you are not expected to remember everything at once, don’t worry! Instead write down what you can and perhaps put it into a word document that you can update easily when the details come to you at a later occasion. Once you have an outline of any issues, complications, problems or newly introduced treatments/medications that you have come across in the past you can then look at keeping your Medical History up to date. To do this I recommend anytime something new comes up, whether it be a new treatment or health problem, that you record it as soon as possible. At the very least look over your Medical History a couple of times a year and make any updates and then print out an updated copy for your HW. You don’t need to go into massive amounts of detail. You just want to create a document that can be looked over quickly and easily if an emergency arises or to update a new member of your Medical Team. Your History may look like the following….

2006

• New Pain Management regime started in Feb.
• C. Difficle diagnosed in May, cleared by June. 1 week in ICU, 7 weeks on Vancomycin.
• Seizure in November. Possible causes low O2 or hypoglycemia.
• New portacath inserted in right arm.
• Whooping Cough booster in August.

You get the idea. You just need a brief timeline that can be scanned quickly. If someone wants further details they can look at your Admission/Clinic Outcome Journal, Medication list etc. Having an up to date Medical History helps you keep on top of things during clinics or admissions and can help you get details quickly. I use mine to jog my memory when I have forgotten when something happened or if I confuse dates etc. Once again, this is not an exercise in “how sick you really are”, don’t let your list get you down. Remember knowledge is power and being organised is can a life saver. And doctors love a pro-active patient!

Admission/Clinic Outcome Journal

Hospital admissions and clinics are part and parcel of your health journey and I don’t know any patient that does not have a diary of some sort to record dates and times of appointments or admissions. An Admission/Clinic Outcome Journal is an extension of that. Whether you simply use your current diary or have a special diary is up to you. I have a Moleskin diary that I use to record everything. And at the end of every year I archive that years journal. Throwing it away would be ridiculous, I have had to refer to old diaries many times to be able to find specific details, dates or times. It is also useful for looking at symptom patterns. So what should you record in your Journal? Anything and everything that could be needed in the future. For admissions I include:

• What the admission was for.
• The dates of the admission (including admission and discharge).
• Any issues or problems during the admission.
• The details of any thing important including the doctor that you dealt with, the date and outcome if resolved during the admission.

If your Medical Team sends you a discharge letter when you get home keep a copy of that with your MW also. It can help you keep track of medication changes, treating doctors and so on. For clinics I often include the following information….

• Medications needed from pharmacy.
• Medication changes (doses, new medications, etc)
• Current symptoms or issues (more nausea than usual, cramps, etc).
• Any forms that needed to be filled out or details that need to be changed.
• Any other news or updates. Your doctors also like to hear any good news that is going on in your world too, if something exciting has happened, let them know. When you have such a close “working” relationship with your team it is nice for them to hear about any of your wins. It really does give them a boost too.

Whether you include this information in your daily diary or separate in your MW just make sure that you keep it updated regularly and keep it somewhere that is easily accessible during an emergency.

Well, that concludes the Medical Workbook series! This is not the be all and end all of health management and you do not HAVE to create a Medical Workbook to be a good patient, the idea is for you to take any part that could help in your health management and create something that will fit into your life. Being proactive about your health care is quite empowering and really shows your team that you take your health seriously. How you do it is up to you, as long as you stay positive and organised your health can only benefit.

Take care, Lily.

lily@thelifewecherish.com

For more information on this website please see my first POST or the ABOUT page. You can find also find out more from the ARTICLES page.

To go over the Medical Workbook series, Part 1 can be read again here and Part 2 here.

Well the feedback from the first part of the Medical Workbook has been very encouraging. I shall waste no time in getting onto the next part…..

Daily Routine Outline

A Daily Routine Outline is very handy for a number of reasons. When you are not feeling well and your mind is elsewhere it can be handy to have a guide of what you need to take or do next. I have used it on days when I can barely get out of bed and my mind is not functioning as it should. It keeps me on track with medications and treatments which is great because it can be a real problem if you have medications that need to be taken at set times and being behind the eight ball can really throw out your medication and treatment regime. This can be risky. A Outline can spare you that dilemma. It is also useful for showing your team or other new medical personnel what you do and when. It also shows that you are organised and proactive in your health care. Having an Outline puts it all together so that you don’t have to struggle through a day, stumbling from one set of meds to the next, not quite on top of any of it. You have something that will help you take your meds and treatments at the right time as well have a useful tool for showing people what your regime is. A good Daily Routine Outline would……

• Be set out in a time table format. Starting with the first treatment or medication that you take in a day and at what time you take it. For example: 8.30am – Ventolin and Atrovent (nebulised). 9am – Morning Medications, check BGL, take Insulin (Protophane 32 units). 10.30am Monring tea – Calshake.
• Include any thing that you need to do in a day whether it be Blood Glucose Levels, Nebulised Medication, Physio treatments, exercise and so on. Any thing that you do in your day to help manage your health. This will give anyone who needs to know a good guide to what you do in a day to keep on top of your health.
• Be a GUIDE only! Remember this is an example of your daily routine. It is for keeping on top of matters when you are not feeling the best and for giving your Medical Team an idea of your daily regime. Do NOT create a regime and feel that you have to stick to it every minute of the day for the rest of your life!! Do not stress yourself out, you need to be flexible when living with any sort of illness, this is not something to add more pressure to your day. It is for being useful on days when you are not at your best or to help show others what your day generally looks like.

I have also found this useful for times when I have to add a new treatment or medication to my routine. I can look at where it will fit in best for maximum benefit. Like I said I have also found it to be a life saver on days when I wake up and cannot remember who I am and what I have to do next!

Health Issues List

Another important list for your Medical Workbook is a list of Health Issues. Once again I have created this for emergencies and so on. Times when you are not well enough to go through the list of problems you have or when you need to give a lot of important Health information to someone quickly with out missing anything critical. You only need to keep this brief, it is not a Medical History, it is just a list of known problems that Medical Personnel need to know in the event of emergency. Your medical List should include:

• Any diagnosis that you have. For example: Cystic Fibrosis diagnosed at 6 weeks of age. Diabetes Type 2 diagnosed at 19 years old. Chronic Pain Syndrome diagnosed 2005.
• Any recent surgery or procedures. For example: Portacath inserted in right arm in 2005. Embolisation on lungs in 2001 and 2009.
• Any Infectious Diseases that you have or had. For example: C. Difficile Colitis diagnosed in 2006.

Having this vital information close to hand gives a Doctor the necessary, essential background information they need to start treating you. I know for some people this list may be long, mine is. I have gotten down by looking at my discharge letter from hospital that lists all my Health Problems. It is not pleasant reading but I have had to teach myself that I am not my Health Problems. They do not have to define who I am. I am a fighter and these Problems will not get the best of me. When I was able to deal with that then I was able to create the List knowing that it was for good Health Management. And it certainly saves a lot of time and effort during a time when both are in short supply!

So that is Part 2 of the Medical Workbook. Having these Lists included in your Workbook will help keep you on top of your Health Management as well as serve you well in the case of emergencies. Part 3 will give you a guide to keeping a Medical History as well as creating an Admission/Clinic Outcome Journal. These will help you to further be prepared for emergencies as well as help you keep on top of your Health by keeping brief records that can help you problem solve new issues and so on.

If you have any questions about your Medical Workbook or Health Management Plan please do not hesitate to email me. Look out for Part 3 in coming days. Part 1 can be read again here. Until next post….

Take care, Lily

lily@thelifewecherish.com

For more information on this website please see my first POST or this collection of ARTICLES.

OK, here we are. This week we will be focusing on a very important part of your Health Management Plan (HMP)….. the Medical Workbook. This week I will show you the items that will make up your Medical Workbook which is a very necessary part of your HMP. This is your “go-to” tool for emergencies, for your Loved Ones to use in an emergency and to help keep track of your medical history as well as your medications. Your Medical Workbook can be a folder (display or arch lever) or a notebook. Anything that you can easily update and carry around. I keep mine in a display folder, keeping document templates on my computer for quick updates.

Today I will be focusing on the first two parts of your Medical Workbook. These are your Contact List and your Medication List.

Your Contact List

A Contact List is an essential part of being a “Professional Patient”! Every Professional has one and as a “Professional Patient” you are no different. A Contact List of everyone and anyone who has a hand in your health care is very important for obvious reasons. In an emergency you need to have those numbers close to hand and in one place. When you, or if you are unable to, when your Loved One has to get in contact with your medical team, your doctor, your physiotherapist or your hospital it is very handy to be able to turn to one page and be able to start dialling. Items that I include in my Contact are:

• My Consultants/Specialists – no many how many you have! I have 4! You need to be able to get in touch with them all if need be. Include all the numbers you have for this person, i.e. practice number, emergency number, mobile number, extension number, secretaries number, etc.
• Your local General Practitioner (GP) – include week day number and emergency or weekend numbers.
• Your Physiotherapist – as above.
• Your Chiropractor – as above.
• Your Medical Team – this may include your Team Coordinator, they are often your first port of call in an emergency as they can get you direct access to your Medical Team QUICKLY.
• Your hospital – the general switch board number and your ward number.
• Your pharmacy – both Hospital and Private.
• Anyone else you see for some aspect of your health including massage therapists, acupuncturists etc.
• Your Family and Loved Ones – Although you might know your family contact numbers it is important to have a comprehensive list of your next of kin so that if there was an emergency and someone who doesn’t know you has to make these calls they will have it all together, in one place and can make those calls very quickly. Quickly being the key word here.

It may seem a lot but if you see a lot of people for your health then you need to include them in your Contact List.  My Contact List is rather long but it sure as hell beats trolling through an address book at a time when I am not really with it. It is also important to give a copy of this Contact List to your Parents or Loved Ones to have handy just in case as well as having one in a central, easily accessible place in your home (even in your car, if you want). And don’t forget to update it as often as needed. I find that keeping a Word document on my computer makes it easy to make changes and print out a new copy to keep in my Medical Workbook and to keep my Loved Ones updated. I put mine in table form and type it in large, easy to read print. I also keep a copy in my diary for easy reference. Don’t you feel more on top of things already?!

Your Medication List

Having an up to date list of your Medications is also another ESSENTIAL part of being a “Professional Patient”. Like anyone with health issues, if I had a dollar for every time I was asked to list my medications then I would be living on my own island in the Caribbean! And like anyone in the same situation, I find it very easy to forget some important medication here and there, especially when I am on at approx. 30 different medications and treatments daily. Having a Medication List that you update regularly does away with that problem. I have also found it useful when having to call an Ambulance to your home, instead of having to list your meds when you may not be coherent, let alone conscious, you or your Loved One can give them the List. It is also always handy for Clinics/Outpatients appointment or when meeting a new Doctor or other Medical Personnel. A thorough Medication List would include:

• Your daily Medications including dosage and how many times a day it is taken. I include the Pharmaceutical Name (and the Generic name if applicable) as well as the main ingredient (for example: Panadol – Paracetamol 2x500mg four times daily).
• The reasons that you take that Medication (for example: Panadol – Paracetamol 2x500g four times daily. Taken for chest pain.)
• A comprehensive list of your Allergies (to any Medications, foods and additives, tapes, adhesives, bees, whatever it may be) and the reaction you have to that item (for example: Ceftazadime (a antibiotic) – facial swelling, difficulty breathing, rash.)
• For the fun of it I also create a Daily Schedule Outline of my Medications including what I take and at what time. This is to give anyone who needs to know an idea of my daily schedule and the Medications I take and when. This is very helpful actually, I have used it to keep myself on track on days when I am not feeling the best as well as when a new Medication is added to my regime so that I can work out when I need to take it and with what else. More on a Daily Schedule Outline next post.
• I also keep a note of any changes in my Medication Regime so that if there are any problems or issues that arise I can go back to check if it could be caused by any changes in my Medications. This has proven to be an invaluable tool.

As a “Professional Patient” it is SO important to know what medication you are on and why you are on it. It makes your doctors job that much easier and can help you manage your health a WHOLE lot better. Knowledge is power and I have found it very useful to be aware of what I am taking and why. You are putting these chemicals into you body so you also want to know what the possible adverse reactions may be to that medication and what other medications it is compatible with or not compatible with. Talk to your Pharmacist or Doctor about these issues. Once again keep a copy of your List at home and in your diary. You will also need to keep your Prescriptions in one place so that they are easy to find. I also mark on my diary/calender when I will run out of Medications. This is important so that you are able to keep on top of your Medication stock and do not run the risk of running out of an important drug (especially during holidays or long weekends when Pharmacies are not open).

By just creating the above two Lists you will be a lot more organised as well as being more on top of your health issues. Feeling in control and on top of things will allow you to be able to do things you felt you couldn’t do when your health was taking control of your life. You are more likely to go places and achieve things that you would not have been able to do otherwise. And that is only a good thing.

Next post I will be writing about creating a Daily Routine Outline and a List of Health Issues that you manage. Once again, my goal is that by the end of this series of posts you will be able to create a fully functioning and effective Medical Workbook and Health Management Plan. Doing so will give you some freedom to go out and achieve those dreams that you have. To live a life where you manage your health, not the other way around! Until then…..

Take care, Lily

lily@thelifewecherish.com

For more information on this website please see my first POST or this collection of ARTICLES.

Spending a lot of time in hospital you learn the things that you should pursue and the things you should let go. It can be really frustrating to know that something is not right with yourself and for it to be passed off as nothing everytime you raise the issue. It may be an inconvenience for your medical team when you keep at it but if you are positive that there is something funky going on then you HAVE to pursue it. It could very well SAVE YOUR LIFE.

Several years ago that very scenario played out in my life. I had been sick for a good while. It was not my normal problems and I just felt something was seriously amiss. I brought it up every clinic I had for over 6 months where I was told that it was just the natural progression of my disease. That was all good and fine, I knew that my Illness was degenerative and that it was going to happen but deep in my gut I knew that something was very wrong. I took the usual steps to trying to find the problem and fix it but when you are stonewalled everytime you raise the issue it can become very frustrating. When I knew that my doctor could not help me anymore due to the fact he didn’t think that things could be improved I decided to change consultants. This was a very tough decision and was not an easy process but after several months it happened. As I got to know my new doctor and his way of working I realised the importance of an open dialogue between a patient and their doctor and medical team. It totally changed how my concerns were dealt with and that made me feel a whole lot safer. Within months of changing doctors we found that I had contracted a possibly deadly infection. I had probably had it for at least 6 months. It almost killed me. I know if I had not pushed and pushed and then used my right to change doctors then I probably wouldn’t be here right now. It is as simple as that.

That experience taught me many things. Firstly, know and listen to your body. If you aren’t aware of your health then it makes a doctors job that much harder. If I had of just ignored my feelings I would be dead. Secondly, I learnt to stick to my guns. I knew that something was wrong and if I had of just swallowed every fob off then I would have paid the ultimate price. Keep at them. Thirdly, I learnt that you need to be willing to take action if you are not being heard. You need a doctor that listens to you. Keep trying until you find one. It will take time but you need a doctor that will communicate well and treat your relationship as a working partnership. Because that is what it should be. And don’t be afraid to remind them that it is you that has everything to lose, not them, when you feel like you are not being acknowledged as the expert of your own body.

I am writing this post today because I have come up against another “Stick to Your Guns” problem and once again I am sure I have no doubt annoyed my team with my persistence but it has paid off because I was right, there is a problem and if I had of just listened to the “it’s OK, it’s normal” routine again then I hate to think what the outcome might be. It is really important to be an expert on yourself. Know yourself. And fight for yourself. You won’t regret it. Guaranteed.

Take care, Lily.

lily@thelifewecherish.com

For more information on this website please see my first POST or this collection of ARTICLES.

So gaps between posts have been a regular occurrence lately, I am sorry about that. I have been in and out of hospital since April which has been making it really had to get back into a routine. I am back in hospital and am trying to get better and get out of here for more than a couple of weeks at a time!! That’s the plan! I am trying to keep my chin up, there have been tears but I am trying to focus on what I have to do to get out of here for a good while. The main thing to do is to sit back, relax and let the medication due its job. That takes time and unfortunately it means I have lots of it to kill! That is when my little plan of action comes into play.

Having an unexpected emergency admission can really throw you out of whack. Having the “luxury” of a planned admission means that you are able to bring the things that can give you comfort, keep you entertained and amused. An emergency admission means that you grab the bare essentials and run. After getting through the tough spot, when you are more alert and awake that is when you start to miss your creature comforts. That is where I am tonight. I miss my photos, I miss my favourite lipbalm that got misplaced in the chaos and I miss my books and notebooks. These things may seem small, say in comparison to big things like my boyfriend but they are the things that keep my happy when I don’t have company. I do however have the internet, some fashion mags and lots of food so things are looking up!! The rest will come with my boyfriend. These things help keep me comfortable while I bide my time.

I like to have a plan of action for hospital admissions. What I want to have achieved by the time I get out of here and when I want to get out of here. I also aim to have little things to do each day. Today it was watch the afternoon old movie on Channel 9 (Guess Who’s Coming to Dinner? today, hooray!) and then have a shower and beautify. I had a yummy feed and am now planning my day tomorrow (visitors! HOORAY!). Giving yourself something to do and a rough time line, I have found, makes the day go by much quicker. For example, I will read this book for an hour and half, then I will have a shower, then I will go for a walk then I will have a nap and so on. If I am too tired to do anything I sleep, if I am awake and alert then I make myself a little routine, I am not a nazi about keeping to it but knowing that I have something coming up really does make things go quicker than sitting there watching the clock wishing time would fly by. I also try and have a project to do for the admission. Finish a study workbook. Read a certain book. Catch up on correspondence. All these little things help. I guess this plan works for any occasion when you need to kill time, not just hospital. It works for anything.

So as bored as I get, as frustrated I sometimes feel, I have my little foot stomp and then get back to entertaining myself and I guess it is one thing I have learnt to do very well. I don’t have to rely on anyone to keep me amused! I also remind myself how lucky I am to now be feeling well enough to be alert and awake, it means I am on the mend and home is coming sooner rather than later. So here’s to that!

Take care, Lily.

lily@thelifewecherish.com

For more information on this website please see my first POST or this collection of ARTICLES.

I am about to be discharged from hospital. It has been a slow, two week admission and I am relieved to be heading home even though I will have to come back in two weeks for surgery. That is disappointing but necessary. I do have a game plan for getting through the post-op mine field but more about that another time.

Getting to see my family and friends is just one of the reasons I am relieved to be going home. The second reason is a bit more complex. As you have no doubt heard through the media, the international community is now at risk of a flu that is new and possibly very deadly. There is no vaccination at this time, that is at least 10 weeks away and it will take approximately 6 months to have the whole of Australia vaccinated. Because this flu is so new and unknown it has got many people very scared. Normal healthy people are freaked out so imagine how this news terrifies people who are immunosuppressed. Those people that know that one flu can be deadly. This is a particularly scary time for them. And this brings me back to hospital, at the best of times hospitals are the place to catch any type of virus or flu. The place is packed with them. When one person is suspected of having a flu, they are taken to hospital. This is that hospital. And that is the very reason that I don’t want to be here. I don’t know how many times I have caught something in here and if this flu is heading this way (and I have heard on the grapevine that there has been one suspected case admitted here this morning) than I am OUT OF HERE!!

To anyone out there who is also worried, you are not alone. The best advice that I can give you is continue to stay on track with your medications and treatments, stay away from shopping centres and large crowds, be vigilant about hand washing and physical contact with people that may be unwell. I will also use Lavender Oil in an oil burner and keep an image of myself as healthy and well in the front of my mind. I ask my family and friends to give me the heads up if we will be somewhere together and they or their children are sick, this gives me the chance to pull out, I have to put my health first. I ask people that are coming to my home to not come if there are unwell – flu or cold – this may seem rude but at the end of the day it is my health and wellbeing that hangs in the balance. You do what you have to do to stay well. Keep a positive attitude, be careful but don’t obsess (easier said than done sometimes!). Be as vigilant as you normally would. And “Keep Calm and Carry On!”

Take care, Lily

lily@thelifewecherish.com

For more information on this website please see my first POST or this collection of ARTICLES.

I put the call out on Monday for any questions that you guys might have about living with Chronic Illness or anything else you wanted to know about me. I had a few through email and one through the comments. I am will try to answer all questions as best as possible but will split them up over the next couple of posts so as to not overwhelm you!

Q. What are your non-medical goals for the future? From my darling Cysta (CF Sister), Somer Love (yes, that is her real name!)……

A. I think it is really important to have goals separate from health related stuff. It gives you something to focus on and live for. At the moment I have a couple of major goals… I am thinking of getting into Health and Wellbeing coaching. I obviously have the background and am currently studying to get the “how to” part of it down. I am currently in the process of organising group work through my local neighbourhood centre for people with Chronic Illness and Injury to help them create a realistic Health Management Plan and work on their goals for the future. It will all be pro bono and I hope to help them in many different ways. I will be doing that in the next couple of months and I am really excited about it. I also have a couple of other projects on the go at the moment but most importantly I just want to settle into my new place and then get working on them. I also dream of going to Italy for 3 months for my 30th in 2012. I will keep working hard to able to do that. Thanks Somer!

Q. Do you use any alternative treatments?

A. I think as with everything in life it is important to have balance. I have a large number of treatments as prescribed by my medical team but I have also found benefits from other places not always recognised by conventional medicine. I use pure Essential Oils in an oil burner (an Aromatherapy technique), I find certain oils like peppermint are great for respiratory problems and I have used lavender oil for years for many things ranging from Insomnia to Depression. I regularly get massages as my back muscles get very tight from coughing. I also get Acupuncture on a semi regular basis. As Chronic Illness can have a devastating effect on your hormones and due to some medications I was on, I had extremely low hormone levels. I was offered HRT and both myself and my consultant didn’t think it would be a good idea. In 2008 I found a doctor that specialises in Bio-Identical Hormones and I started them in April 2008. It has made an amazing difference to my energy levels, my headaches, my muscle tone and my appetite. It was a choice I made and it has been one I do not regret. The most important thing is that when you try any new treatment you need to be honest and upfront with your medical team – even if you think they are not going to like it, you must tell them. At the end of the day it is your choice and if it is not going to effect any of your other treatments then go for it. Also any good alternative therapist will never ask you to stop your medications – if they do…. walk. All of the above are complimentary therapies. They are to be used to compliment your current treatments not as your sole treatment plan, they will work best together.

Q. You were assessed for a Lung Transplant, are you listed?

A. No, I am not listed. I was first assessed in 2006 and then again in early 2007. This was due to a severe decline in my lung function and the doctors thought it would be very unlikely I would recover that. Their predication was that if I didn’t have a transplant within two years that I would die. This was obviously upsetting but at the same time, I knew in myself that I could get past this horrible period and that I would be able to recover some of what I had lost. And I have done exactly that through hard work, blood, sweat and lots of tears. I had to get really strict with treatments and not put my head in the sand. I am a much more aware patient and I am now also very grateful for the reprieve that I was given. Lung transplant will most definitely be a part of my future if possible but at the moment I am not there and I am happy about that.

That will do for tonight. I hope that you have found out something new and if you have any other questions please do not hesitate to email me. As I said before, I will be moving house this weekend as well as working next week so I may not be able to post as regularly as normal – I apologise and will aim to be back on board as soon as possible (lets hope Telstra will be in the mood to give me a swift new connection!).

All the best, Lily

lily@thelifewecherish.com

For more information on this blog or myself please see the ABOUT page, or the great posts on the ARTICLES page.

Living with Chronic Illness, especially Cystic Fibrosis, means that hospital admissions are a fact of life. I don’t like it but it is something that I have to do for me to have something of a normal life outside of here. I need to spend time here to recharge and renew my batteries. I need IV antibiotics to help with the ever present infection in my lungs. I need dietary supplements to help me keep up with my high calorie/high energy needs. Tomorrow I will have a blood transfusion to help with my iron levels. These are all things I need to do help keep me out of here most of the time, to keep me with my loved ones. I know all these things. I tell myself every time I am here why I need to be here but that doesn’t always help with the isolation you feel.

Isolation is probably a funny thing to feel when you are never actually alone. And you are NEVER alone in hospital! And while I know I have to be here and that my loved ones are only a phone call away there are times when I feel so lonely. Tonight, during my phone call home, I could here activity in the back ground. I could almost see my family having dinner and relaxing afterwards to watch a movie. I wanted to be there with them, chilling out. It made me feel so far away.

The isolation comes with the territory so I have had to teach myself how to deal with it. Apart from reminding myself that my loved ones are only a phone call away or that they will be down to visit soon, I also give myself things to do so that I distract myself from feeling so lonely. This admission I have a had a friend also in which has given me someone to talk to when I need a chat, that has been great but sometimes there is no one else in. That’s when I set myself projects. It might be to finish a Workbook from my course. It might be to read a book I have wanted to read for awhile. It might be to organise something to do when I am out of hospital. This time I have given myself a writing project. I have been writing about living with Chronic Illness. About what to expect and how to cope. It has kept me entertained this admission and although I don’t know what I will do with it when I am done I have enjoyed being able to get all my experiences and opinions out of my head and into something else. Doing things like this really helps me feel like I am doing something productive and useful instead of just sitting around, doing nothing. It helps me deal with the isolation. If I am able to do something to distract myself it doesn’t hurt so much.’

Every body is different, everyone has different ways of coping with their admissions but I have found, through my own experiences and from what I have seen around me, that those who keep themselves entertained seem to heal quicker and get out of here faster. And by keeping entertained you can keep that feeling of isolation at bay for a little bit longer….

I am going home on Monday so I only have another couple of days to go, I am excited to go home to my loved ones and I will talk advantage of their closeness. 

Have a great weekend, Lily

lily@thelifewecherish.com

For more information on this blog or myself please see the ABOUT page, or the great posts on the ARTICLES page.

During this hospital admission I am lucky to have an old friend in at the same time. He also has CF and we have known each other since I was 11 years old! Almost 16 years! Goodness! I am grateful to be able to catch up with him as I have lost many of the friends I grew up with, CF taking them away from me way too soon. Tonight we have a had a great talk about growing up, spending time in hospitals and the effect that it has had on us.

We had a good laugh tonight thinking about the night that we had pinched a few 50ml syringes and had a midnight water fight! We got water everywhere, beds were soaked, blinds were sopping wet, the floor slippery and probably quite dangerous but we had an absolute blast. We were all laughing so much that one of the boys had a massive coughing fit and ended up vomiting from all the excitement. The nurses then worked out what was going on and boy, did we get into trouble! We were sent to bed early the following night as punishment but we went with a smile on our faces, for sure! We had a good giggle until we realised that we were the only two left out of the six kids there that night. It is so ironic that in a place where you could pretty much smell the fear when you walked in the door, I have some of my fondest memories. The joy of a children’s hospital is that we were all children and we had the ability to make the most boring or even frightening situation into something that helped put a smile on our faces.

I can think of many times when laughter really was the best medicine but I also remember some upsetting times that make it hard for me to return to that hospital, or for me even to remember them. The thing with having Chronic Illness and spending time in hospital is that at a very young age death becomes a topic of conversation. We often changed the subject very quickly but it lingered sometimes making for a very quiet lunch time. If one of our friends came in and they were put into a single room, we knew it wasn’t good. As I got older, I would try to comfort the younger ones as much as possible or I would do something to make them smile, distract them from their thoughts for the moment.

I had the pleasure of knowing some really wonderful kids. I noticed that a lot of these kids had so much personality. Despite spending most of their lives in hospital they were up beat, cheeky and so funny. Sometimes I would laugh so much my tummy hurt! You quickly became friends with your room mates and while there would be the odd tiff, the silence never lasted long! Some of these kids came from a long way away, which is even further away in a child’s eyes. I saw how hard it was for parents to leave their precious children behind, telling themselves it was for the best, praying that they would be cared for and treated with tenderness. I have no idea what it would be like for a parent to have to leave your child behind, life doesn’t pause because you have a child in hospital. I could see it tore their hearts out. For a while I was the eldest female patient in the ward and I became a big sister to some of the young girls who’s parents lived so far away they might not see their child for weeks. I regularly woke up with a little one in my bed, wanting a cuddle, someone to tell them it was going to be okay. Someone to love them. I did the best I could and really, I came to love some of these kids. I was often being asked by the nurses to help bath them as they wouldn’t cooperate with nursing staff, they wanted one of their own. You became family pretty quickly. That is the best of the situation. One of the worst experiences I had was going to the funeral of one of “my girls”, it was the first and last CF funeral I went to. She was only 10. It was way too much for me to cope with at only 15 years old.

Growing up in hospital has helped shape the person that I am today. I could to talk to a wall. I have very good communication skills. I make friends easily. I am able to be on my own. I can stand up for myself. I have learnt to entertain myself. If you are reading this while thinking of the child that you have to leave in the care of hospital staff, I can only say one thing about children and that is that they are resilient. If you let them, they will learn to find the fun in anything. Yes, they will be exposed to pain and sadness, that is the nature of illness and you cannot prevent that. However, as long as they know that they have a family who loves them completely as well as the opportunity to talk about their experiences, good and bad, then they will be OK. And that is all you can hope for.

All the best, Lily

lily@thelifewecherish.com

For more information on this blog or myself please see the ABOUT page, or the great posts on the ARTICLES page.