Tuesday, 25 September 2012

Chronic Illness & Disability - My tricks and tips

I know that every chronic illness and disability is different regarding symptoms and the effects that it has on a person, but the difficulties and restrictions people face with everyday life and tasks can be very similar. 

This post is to share my tricks and tips that make everyday tasks that bit easier for me and so I can save my spoons for the more important stuff like taking care of my baby and actually trying to live a normal life. 

For those of you that are new to my blog and have no idea what I'm talking about when I mention those all important 'spoons', please take a look at  'The Spoon Theory'.  I think it's the best analogy of how people with chronic illness & disability may feel. It explains me perfectly.

Maybe many of you may use some of these or if not, give them a go. Anything to make life easier if worth a try. 

Obviously some will and will not relate to you depending on your condition but hope you can find something which you can identify with.

Joint Supports and Walking Aids
  • Bandages & Splints - As I sprain really easily I have bandages and splints for just about every joint. I don't wear them all everyday or i'd look like a mummy, but I keep them handy and wear them when any of my joints are feeling particularly weak saving me from spraining them further.
  • Support Belts - I have a Serola SI Support Belt which I wear religiously. As my hips are one of my most hypermobile of joints I wear it everyday to give me that extra support when walking around. I can notice the difference straight away if I ever leave the house without it. I basically feel weaker and get tired quicker than usual. My hips, legs and lower back ache a lot more when I don't have it on. They are one of the more expensive types of belts and there is no way that the NHS are going to hand anything this good out but they are well worth the money. Plus they are pretty slimline and dark in colour so no-one can notice that your wearing it, even under tight clothing.
  • Folding walking sticks - These are great, especially if your going out to a party and dressing up and don't want to carry around a full size stick. As they fit in your handbag you can also take it out with you even if your feeling OK just as a precautionary measure. You can get them as cheap as  £8 on Ebay and in a load of different colours and patterns. Mine is just a plain black one but i'm planning on 'blinging' it up :)
Home treatments
  • Heat pads and hot water bottles - If there is anything that I can say that definitely helps my joint and muscle pain it is heat. At the minute i'm going through endless supplies of heat pads throughout the day as I wear them under my clothes but they're not cheap. I would recommend buying a trusted old hot water bottle or the more modern microwavable heat wraps and packs for you to use when you're at home.
  • Jacuzzi Spa Bath Mat - These things are A M A Z I N G!!! Ours is pretty old so could do with updating to a newer model but if you can't afford to adapt your bathroom with a fully fitted jacuzzi bath then this is the next best option. I just wish I could sleep in it! I think its the only time my muscles feel fully relaxed. Maybe I should start looking for a job that requires me to sit in a hot jacuzzi all day, i'd never be off sick!
  • Epsom Salts  - Not to take orally but to use in the bath. These salts are also commonly known as magnesium sulfate. They work by the sulfates being absorbed through your skin, increasing the magnesium levels in the body which help relieve muscle pain and stress, improve circulation and apparently can improve your nerve function to! Another bonus is that it makes your skin feel nice and soft.
  • Tens Machine - Another must have for those chronic pain sufferers. Not exactly cheap but great for first thing in the morning when your legs wont stop spasming and the pain killers haven't yet kicked in. Not exactly a cure but a very good quick fix.
Things around the home

These are things that aren't necessarily aimed at people with disabilities or illness but I've found using them help save time, energy and those ever important spoons!

  • Long handled dustpan and brush - For the dreaded house hold chore, cleaning the floors. We could do without having to do chores but its obviously a must especially if you have small children who are constantly crawling around, they seem to pick up everything they're not supposed to! If your not lucky enough to be able to afford a cleaner or have a family member help out than this product is a must. If you have trouble with your back or any lower joints and you can't bend well or get down on the floor to clean than they are great. It means you can sweep the floors and pick up any dust/dirt without feeling like you're going to break your back.
  • Bar stools - If your like me and have trouble standing for long periods of time but don't want to spoil the look of your kitchen by having a ugly looking perching stool or seat which reminds you of an old people home on view, than why not get a bar stool to help you when your busy in the kitchen? At the minute I have a folding bar/kitchen stool which I will use when cooking or washing the dishes. You can pick these up relatively cheap at places such as Ikea. They're also ideal if you get lumbered with a huge pile of ironing! 
  • Buying pre-peeled veg - This tip makes cooking a Sunday Lunch so much easier. No standing for nearly an hour peeling loads of veg and cutting it all up ready to cook. It simply comes out of the freezer and straight into the oven saving you time standing around and if your like me, helps prevent spraining your wrists while chopping everything up.
  • Using the kettle - Instead of filling the kettle right to the brim I only put enough water in for what I need or what I can hold comfortably so I'm able to lift without spraining. This does mean that when filling the babies bottles it takes that bit longer but worth it to not cause any injury.
  • Dry shampoo - I've recently had my hair all cut off into a bob. I never thought about how much more time it takes to style shorter hair! My tip is to wash it less often and use dry shampoo. Or even easier just keep your hair long enough to tie back so you don't have to waste energy attempting to dry it and then style.
  • Travel hairdryer and straighteners - If you can't go a day without washing your hair than I suggest buying a travel hairdryer and if necessary, straighteners to. I've only just recently realised as my wrists are starting to get weaker just how heavy my full size hair dryer is and how much it actually takes it out of me trying to hold my arms up long enough to dry and straighten! I've resorted to using my travel hairdryer as its much lighter and easier to hold up.
  • Product size and weight - Buying products that aren't too heavy, such as shampoo & conditioners, milk and boxes of washing powder can really help. Don't buy large bulk items just because its cheaper. I've had to start thinking about will I be able to lift the product without hurting myself doing so. . 
  • Buying products that can be opened easily - There have been a few time when my partner has bought a carton on milk and not opened it for me before he's left for work and my hands have been too weak to get the top off resulting in no cup of tea or cereal before work. The ones with the foil caps are ideal, although obviously the glass bottles that they come in are heavier than the regular plastic. I also buy packets of powdered baby foods which are easy to open just in case I have trouble getting the jar lid off his regular food.

Things that will help which I haven't got round to buying yet!

  • Instant boiling water - Without having to fill and boil the kettle. You can get products such as the Tefal Quick Cup which has instant hot water at the press of a button so no need for heavy lifting!
  • Lever taps - We've just bought a new house and i'm really hoping that it already has lever taps installed instead of normal twist taps. Much easier to turn on with weak wrists.
  • Shampoo and Conditioner dispensers - To save on trying to squeeze the last bits out and lifting the heavy packaging. They will have to be stylish ones of course to fit in with my new bathroom.
  • A new bed or mattress - Or both! I've found an adjustable bed which also has a memory foam mattress but it's pretty expensive. I think the cheaper option of a memory foam mattress will have to do for now. Once we're in our new house anyway.
This is all I can think of for now but there are probably many that i've missed off so please feel free to comment with any spoon saving tips that you use.

As I mentioned i'm moving house soon. An actual 'HOUSE' not a ground floor flat like we're in now. I will obviously have to find more ways of adjusting and adapting to living over two floors instead of just the one especially when at the minute I try to avoid stairs as much as possible. I've been trying to think of ways of building a slide down the stairs so me and my baby can get downstairs on a morning but can't see that being very sensible! It would be fun for him but not very practical having a huge slide in your house!! Don't think the husband would agree with me either lol :) 

I will update my blog with a 'tips & tricks ii' post once I've had time to work out what helps and what doesn't.

Stacey xxx

Monday, 17 September 2012

My Miracle Week - An endless supply of spoons. Why couldn't it last?

Arriving at our amazing wedding venue

This post is just to remind those with chronic illnesses that 'sometimes' miracles can and do happen.

Back in July I got married. I was so worried that the stress of everything would make me ill on the day and i'd have no energy. I had been planning the day for 2 year. Everything had to be perfect. I didn't make it easy on myself though. I'm pretty creative. I like to make things and love anything to do with arts and crafts so decided to make all stationary, flowers, centrepeices and decorate the cake myself! 

Bridesmaids Flower
 Made with artificial flowers so my bridesmaids could have as a keepsake

My first ever attempt of cake decorating

Table Centrepiece and Table Name Card
(Our wedding was Newcastle United Themed - Everything Black & White)

Somehow I was completely fine. I mean really really good!

I didn't  wake up in chronic pain like usual, I was just a bit stiff. As soon as my medication kicked in ( I took extra just to be safe) I was up and ready to go.

I went off and had my hair and make up done, whilst downing some champagne, and then back to my mothers to get the dress on. The wedding cars and my dad were already there when i got back. I was definitely running late. Due to get married in 15 minutes and I was still in my pyjarmas but still had time for a pint of wine (there were no wine glasses left - i didn't drink a pint) and quick smoke. The photographer has pictures to prove it. Classy, I know!

By this time my meds and wine had well kicked in and so had the nerves!!

During the service my legs ached a bit but nothing too bad. I didn't really notice any pain until it came to our wedding breakfast when I look at the time and realised I had no bag, no tablets on me and I had missed my afternoon pills by 3 hours!! 

Cue sickness!!!

During and after the wedding breakfast I was constantly throwing up, dizzy and weak. Complete withdrawal. My mother went and got my pills from the car, I quickly took a load (extra again) and had a lie down.

Half an hour later I was back up on my feet and enjoying my day with family and friends.

Wedding party in the courtyard of Durham Castle
I have to say, from then on I don't remember being in any pain at all! Maybe I was on a high with it being our 'Big Day' or maybe it was just the amount of alcohol and medication consumed. Whatever it was, it was amazing! 

I had the best day I could have ever imagined. (Except for the dodgy hour during the reception but I can erase that bit)

I was expecting to not be in the best of shape the next morning but again I was surprised by how good I actually felt. We spent the morning walking along the river in Durham. The sun was out. It was just perfect. I even had a pair of wedges on and I was walking fine!! 

Surely this couldn't last right?

Well it did!!! For a whole week!!!

We went away for a mini honeymoon to Portugal. We stayed on a gorgeous golf course with private villa which had a roof top terrace and hot tub. It was so nice to be away and although I missed my baby boy a lot, I really enjoyed the break. 

We done so much in our time there and I never really felt too bad except in the mornings but I suspect that was more to do with drinking too much. I had an endless supply of spoons! On the last day I even managed to go to the driving range, something I never thought i'd be able to do again. I really did pay for it the next day, well the following week actually but I suppose after a week of being basically pain free I couldn't have expected any less.

I have no idea how I felt so good that week with so much going on.  Maybe it was just the endorphin's kicking in and that being in the sun and spending time in the hot tub that made me feel that way. The stress of the wedding had gone and I was just enjoying myself.  I just wish I was like that all of the time. I actually felt 'normal' for the first time in ages.

I hope it happens again soon!

If only.............

Monday, 3 September 2012

30 things you may not know about my Invisible Illness

September 10th - 16th is National Invisible Chronic Illness Week
There are many things that people can do to get involved including blogging for the cause, uploading pictures of their 'visible hope' and obviously tweeting and sharing links on facebook. Its purpose is to generate awareness about all types of Invisible Chronic Illness.
During this week, between the 10th and 14th, there will also be a virtual conference where anyone can take part. For more information you can visit the website.
The '30 Things Meme' has been created so that us bloggers can share information about our daily life with others. It's there to help us be more compassionate to all of those around who are suffering in ways you may not have noticed. From reading other bloggers meme's I've found I have a lot more in common with other sufferers even if our illnesses are not the same.
Here's my '30 Things Meme'
1. The illness I live with is: Hypermobility Syndrome/ Elhers-Danlos Syndrome - Type 3 - Hypermobility
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: I was born
4. The biggest adjustment I’ve had to make is: Having to say no, mostly to social engagements and learning what my limits are. (I'm still learning!)
5. Most people assume: That I'm fine or better because i'm out and about and I don't look sick.
6. The hardest part about mornings are: The muscle cramps and constant aches. Having to pull myself out of bed and get my (very heavy) 8 month old fed, ready and to childcare and then myself to work. It's agonising when you feel like your legs are on fire and both back and hips are about to break.
7. My favorite medical TV show is: I don't really watch medical TV show but if I had to choose I would pick Supersize Superskinny
8. A gadget I couldn't live without is: My phone. Being connected with loved ones, social media sites, online support groups and my blog is what keeps me going. Especially if i'm having a particular bad pain day and stuck in bed. Texting and even holding the phone up can sometimes be strenuous but I wouldn't be without it.
9. The hardest part about nights are: Nights can go either one of two ways. Sometimes I'm that drowsy from meds I don't wake up when my baby crys and my partner has to do the 'night shift'. My pills can also have the adverse effect and I can be wide awake and hyper getting little sleep making me worse pain wise the next day. 
10. Each day I take _27_ pills & vitamins
11. Regarding alternative treatments I: have tried: Physio (no better from it), Massage (hurt more afterwards), Acupuncture (was told it would last a week - it lasted 2 hours), seen a Chiropractor (took about 3 month before I felt a small difference and went back to 'normal' as soon as I stopped going) and  to an Osteopath (AMAZING! But only for 24 hours and far too expensive to see every other day.)
12. If I had to choose between an invisible illness or visible I would choose: I think most people would answer this question by saying visible but i'd rather have an invisible illness. I can see their reasons why they'd say visible as in ''people wouldn't question their illness or disability'' but I'd rather appear to other people to as an equal and as able as they are, even if on the inside i'm broken. I don't think that the worlds view on illness and disabilities are where they should be and that discrimination unfortunately still exists. I obviously don't agree with this but I feel that ignorance is still a factor that needs to be tackled.  
13. Regarding working and career: I studied Music from a young age and eventually went to university and graduated with a BA Hons in Contemporary and Popular Music. Throughout my time at college and uni I worked at an entertainment venue and undertook a number of roles which I loved. After I graduated I secured a job at another entertainment venue as a Duty Manager. I love working in events and have done so for the last 8 years but i'm finding it increasing hard to keep up with the physical aspects of my role. My GP and Specialist have suggested to either give up work until I'm coping a bit better (not an option) or to find alternative work which isn't as physical and is more desk based. My employers have currently made reasonable adjustments so that I am able to stay in employment until I feel I am up to taking up my full duties again. I'm currently looking for alternative employment. I know that I could walk into a call centre job, there are so many being advertised in my area at the moment, but I do not want to walk away from the industry that I love working in. Since changes have been made at work my attendance has been faultless so I know I am able to cope with full time hours, I just need more regularity rather than constant shift changes and late nights at work and maybe a job based in the co-ordination or planning events instead of the management.
14. People would be surprised to know: I can't remember the last day that I was completely pain free.
15. The hardest thing to accept about my new reality has been: That my son will be an only child. I had such a hard and painful pregnancy due to my condition that in the end I was housebound unless someone came and took me out and pushed me around in a wheelchair. It was the worst pain i'd experienced even labour seemed easy after the months of pain. I had always wanted two children but I would never put my body through that again, not to mention that i'd be at higher risk of miscarriage, rupture of membranes, hemorrhaging and passing the illness onto the child. I obviously did not know all of this before I had my son who luckily isn't showing any of the early signs of the illness.
16. Something I never thought I could do with my illness that I did was: To be honest I try my hand at anything even if it does wear me out. I try to do the same as I did before I was diagnosed. Just a lot a less frequently and probably a lot slower.
17. The commercials about my illness: There are none.
18. Something I really miss doing since I was diagnosed is: Going out on nights out with the girls and dancing all night.
19. It was really hard to have to give up: Wearing high heels. I have so many gorgeous shoes that I can no longer wear. I'm holding on to them just in case.
20. A new hobby I have taken up since my diagnosis is: Writing this blog.
21. If I could have one day of feeling normal again I would: Dance, ice skate, go for a run (not that i'd get far) and a nice long walk in the lakes.
22. My illness has taught me: Not to judge others. 
23. Want to know a secret? One thing people say that gets under my skin is: 'So are you better now?' (I cant remember the last day when I was 'better'! This condition does not go away!) 'But you don't look sick' (Ok then, what does 'sick' look like?) 'What have you done to your foot?' (because I'm limping does not mean I have hurt my foot) Its a fluctuating condition, just because I look like i''m walking better or have more colour than other days does not mean i'm better. I could go on :(
24. But I love it when people: actually listen and are generally interested.
25. My favorite motto, scripture, quote that gets me through tough times is: I've never had a moto. Cuddles from my baby boy are all I need to get me through :)
26. When someone is diagnosed I’d like to tell them: Join the support groups online (HMSA and facebook). There are loads of people going through the same struggles as you and are willing to give friendly advice. If you need to rant, vent or chat about any illness related stuff they're great for all of that. It's great being able to talk to people who are going through the same especially if you have no one around you who fully understands.
27. Something that has surprised me about living with an illness is: How much ignorance there is towards people who are sick, especially those who have an invisible illness.
28. The nicest thing someone did for me when I wasn’t feeling well was: Just being there for me. Helping with household chores, looking after my baby when I can't, cooking for me, asking if I'm alright and if there's anything he can do. My husband does all this, I can't thank him enough. 
29. I’m involved with Invisible Illness Week because: There needs to be more awareness about invisible illness. Just because someone doesn't look sick doesn't mean that they aren't and the majority of people don't understand that. The more blogs that are wrote for this cause the better.
30. The fact that you read this list makes me feel: Heard.