Monday, 29 October 2012

Being Prepared for Emergencies

I'm sure that all of you reading this will have seen the news reports about Hurricane Sandy, preparing to batter the east coast of the US.

Being in the UK, this doesn't affect me directly, but it does affect many of those that I love, and it reminds me that emergencies are different for those of us with chronic illnesses or disabilities.

Emergencies, when they're not actually happening to me, seem a long way off. Improbable, even. It's that age-old mentality of 'it won't happen to me'. But it might happen to me. Or to you. Really, it might, and there are a few things that you can do to make it less frightening.

If you've been reading my blog for a while, you may know that I have a Big Red Folder (blog post about that here), where I keep my important medical information. At the very least, make sure that you have an 'executive summary' for each member of your family:

Name (including what you prefer to be called - I'm much more likely to respond to Jo than to Joanna)
Next of kin: Name and contact details - try to include someone who doesn't live with you as well, so that they can be contacted if your borough is flattened by aliens, for example.
Current medical issues: Include ALLERGIES and all diagnosed medical conditions, even if they are usually well-controlled. Emergencies have a nasty habit of causing things to flare up.
Medications: A list of all medications that you take - regularly and 'as required' or in emergencies (this could be a repeat prescription form from your GP)
Previous medical history: Significant illnesses, procedures, surgery, injuries
Family history: Keep this brief - just the relationship and names of significant conditions

If your medical conditions are atypical, complex or rare (or all three!), I would recommend getting a letter from the doctor who knows you best, giving information about your conditions and treatment, and including their contact details. Alternatively, you could print off some general information about your condition (try the website for the national association for your condition), and include copies of any helpful medical reports or discharge summaries that you have from your own doctors.

Put all this information safely into a folder, envelope or plastic wallet, including a soft copy on USB stick if you can.

There are lots of different types of emergency, and lots of different types of chronic illness, and I'm certainly not going to pretend to be prepared for every possible incident, but there are things that can be done with relatively little inconvenience.

Things to do before any emergency:
  1. Register with your local gas, electricity and water suppliers if you have anyone in your family with medical requirements or limited mobility. They may be able to warn you of any planned outages, provide you with bottled water or power from a generator, or arrange other support in an emergency.
  2. If you're in the UK, I would recommend signing up for emergency 999 text messages (, especially if you have speech or hearing problems, or breathing problems that can make it hard to talk. On this topic (dealing with the ambulance service), you can ask your GP to request a 'flag' for your address, so that first responders have vital details (e.g. allergies to common emergency medications). I would also recommend getting yourself a MedicAlert bracelet, or similar.
  3. Keep ice packs in the freezer. Not only are they useful for treating some injuries, they will help to keep the things in your freezer cool in a power cut, or you can use them to keep medications cool. You can also buy 'instant' cool packs.
  4. If you rely on any electrical equipment (e.g. nebuliser, feeding pump, IV pump, motorised wheelchair), keep them charged if possible. Either have spare equipment (portable) or spare batteries for an emergency.
  5. Try to keep at least half a tank of petrol in the car at all times, along with a basic repair kit, jump leads, a small first aid kit, a torch, a spade, and an up-to-date map.
 In the event of an emergency, you may find that you need to get out of the house in a hurry, or that you have to stay in the house for several days. It's always difficult to remember everything, and this is worse if you (and the people around you) are anxious or hurried.

Things to pack:
Pick a strong bag that is large enough to hold what you need, but small and light enough to carry.  Put your most important items into waterproof containers or ziploc bags, and into a lightweight cooler if necessary.
  1. Important medical information folder
  2. Basic first aid: Sticking plasters, triangular bandage, elasticated bandage(s), gauze, medicines to treat headaches, sore throats, allergic reactions, bites/stings; tweezers, scissors, sanitary products, nappies (if you have babies), sunscreen. If anyone in your family has sensory issues or migraines, include sunglasses or an eye mask, and ear plugs
  3. Medications: I try to pack enough medication to last me for 48 hours. A week would be better, but for me, that brings up a whole other set of problems with being able to carry this kit!
  4. Durable medical equipment: If you don't use the equipment regularly, make sure that you know where it's kept and that it's kept in good condition. Make sure everything is charged, and that you have spare batteries. A torch, emergency phone charger, and battery-powered radio should go in this kit too.
  5. Disposable medical equipment: Pack enough to keep you going through as many doses of medication as you are taking with you, plus a few spares. Include tubing, syringes, catheters, needles, medication 'pens', dressings. Take everything you would need in the event of pulling out a tube, falling into a (dirty) swimming pool, getting a blocked tube, or getting a hole in any tubing (including wheelchair punctures).
  6. Getting rid of waste: Small plastic bags, larger plastic bags (for waterproofing), ziploc bags (for keeping things clean and dry), a sharps bin (if you use sharps)
  7. Cleansing wipes, tissues, alcohol wipes, anti-bacterial surface wipes, alcohol hand gel, disposable gloves (and sterile gloves if necessary, e.g. if you have a central line)
  8. Monitoring: This includes blood sugar testing if you have diabetes, blood pressure, pulse, oxygen saturations, temperature, peak flow
  9. Nutrition: Tube feed, TPN, individually-wrapped snacks, boiled sweets, small containers of UHT milk, bottled water (plus baby formula for babies, and/or food for any pets you plan to take with you), drinking straws (for sharing bottles/cups) and cutlery (a spoon at the very least)
  10. ID, bank cards, cash, driving licence
  11. Change of clothes for everyone. This can be as minimal as clean underwear, socks and a hat (for warmth or sun protection), depending on what you can carry, and what weather conditions you expect. Include a toothbrush, toothpaste, deodorant.
Emergencies are always stressful and frightening, but if you know that you don't have to run around the house packing, things will be easier. Keeping clean is a major problem, so having plenty of plastic bags and wipes can be useful. They don't weigh much or take up much space, but can make such a big difference in keeping clean and dry, and separating clean things from dirty.

Thinking of all those in the path of Hurricane Sandy.

Monday, 1 October 2012

An Apology, Some Regrets and a New Baseline

Firstly, of course, I have to apologise for having neglected the blog and my readers. There isn't one single, simple reason for this, but be patient with me and I'll try to explain.

The end of August saw the first anniversary of my wedding. As I reflected on the last year, and answered questions from friends about the first year of 'wedded bliss', I found myself overwhelmed by all the things that have happened in that time; all the medical and emotional changes that we've faced.

It has become increasingly clear that my husband and I are unlikely to have a family of our own.

I have a genetic disorder that has an autosomal dominant inheritance pattern. Any 'natural' child of mine would have a 50% chance of inheriting the same disorder. While I don't feel that life isn't worth living, or wish that I hadn't been born in the first place, and while I certainly wouldn't consider this disorder a reason to terminate a pregnancy, it would be irresponsible to plan a family without taking it into account. If a child of mine were to be affected by this disorder to the same extent that I am, I would feel extremely guilty. I have been told by my doctors that it's likely that I would spend much of any pregnancy bedbound, that the baby would possibly (or even probably) be born prematurely, with the risk of uterine rupture, further stroke-like episodes, further damage to my joints and internal organs (including my heart and lungs), and with potential problems for the baby associated with prematurity or rapid labour. Even if I were to 'get through' a pregnancy by sheer grit, determination and obstinacy, it's probable that I wouldn't be well enough to look after a child without a LOT of help.

I do know that other people have managed this, and my doctors have said to me that if it's something that is really, really important to me, they are prepared to work with me to make it happen, but they have all emphasised the risks and potential complications. I know that if, in my heart of hearts, I could not live without being a mother, we could make it happen. I don't feel that way, and though I feel sadness and guilt that I won't have children, won't ever hear the word 'mother' applied to me, won't give my own mother and my husband's parents the opportunity to be grandparents (though thankfully my husband and I both have siblings). My husband won't have the opportunity to be a father unless I die soon enough for him to remarry and have children. Obviously, that's not my preferred option.

Things recently have been bad enough that even the thought of starting a family has been pushed out of my mind. I can barely lift the kettle three times daily, let alone a child. At first, I assumed that I'd overdone it, causing extra symptoms, but it's now clear that this is probably my new 'normal'. Not only is my baseline considerably lower, causing more symptoms and requiring higher doses of medication, but my ability to handle any activity has dropped significantly. I went to a beautiful wedding ten days ago. I was thrilled to be able to celebrate with a close friend, and rested carefully in the run-up to the ceremony and reception. I timed my medications and rest periods so as to be as well as possible. I 'survived' (and loved) the day, but it knocked me far, far harder than I could have anticipated. I was totally bedbound for a couple of days, and was unable to walk even tiny distances within the house, having to lie flat on the sofa or in bed. My symptoms were completely uncontrollable, even with maximum doses of breakthrough medications, and this has only improved a little bit after a full ten days. I'm used to having to pace myself, and used to having to pay for any fun that I have, but this change is frightening for me.

There is still time to recover, given lots of rest, extra medications and IV fluids, but I'm scared that this might not happen.

There are so many things that I want to do. There are so many people that I love and I want them to be able to share my life. But I have so little to give. So little energy. I wish that I could give more, but everything I have is taken up with just surviving. The little that I can give to my friends - an occasional visit, postcard or telephone call - seems so inadequate. I am so grateful to my friends and family. They have kept me going, kept my spirits up through all manner of difficulties, and remained loyal and loving despite the hospitalisations, cancelling plans, and all sorts of other difficulties. I wish that I had some way to let them know of my gratitude, or to uphold my side of the relationship; to give back even just a portion of what I am given.

It would be fair to say that I am struggling at the moment, both emotionally and physically.

Naturally, I am a pragmatist. Things are the way that they are, and if I can't change things, I may as well get used to them and see if I can enjoy things as they are, rather than as I would prefer them to be. I know that things will be ok, but change is hard. Physical deterioration is hard. My failure to be a good wife, daughter, sister or friend is hard. But life is worthwhile. I love the world in which I live, and am grateful to have the opportunity to experience things and spend time with those I love.

This is all a part of my journey. Thank you for travelling with me!