Informative Disability Links in Ireland

Sorry about the delay in updating recently, I have just been lazy to be honest!
I found a comfy place on the sofa and usually hibernate down in the sitting room away from the computer now, choosing to use the phone or the iPad and I hate blogging on anything other than a proper keyboard, thing is I have lost all motivation as a result of this  so I decided to kick my own but into action today, and here we are! 

This is me, bursting with motivation…

yeah, right! :p

I wanted to update you on what is going on during this, what I can only call; Process of transition! as there may be people out there that may find themselves in the same situation as me, having to now use a wheelchair or living with any disability and not knowing how to adjust or how to go about getting the information that they have rights to and deserve. So, if I am living the experience, let me share it and help those who may not know what to do or where to go for these things.

This thing came out of nowhere for me, took a little while to get my head around and once my husband and I got our heads around the new situation we find ourselves in and the fact that I have a research based background, I went about doing exactly that, researching the poop out of everything got to do with our new situation and how we could adjust.

Here I highlight some links I found full of information regarding a new disability, just click on the blue words to be taken directly to the sites I am talking about. 

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Firstly, DONT PANIC! You will get through this, there are supports, family, friends, doctors, there are ways and means of finding out information, just dont be afraid to google information (all site links I have given here are legally legit! be careful what you find and read online, be sure they are from legitimate sources.) /Or if you are not interweb savvy then RING or JUST ASK! Do not be afraid to ring your doctor for help, my doctor has been great to share any infrmation he knows or finds.  Call places like Enable Ireland, other disability centers or even Citizens advice or social welfare regarding financial help and legal entitlements, if needed. These places are here to provide you with information, use them.

I have a friend who has been in a chair all her life and she was a wealth of information to me, she also wrote a book about her experience too, so be sure to check it out, It is called Dont Tell Me I Cant, by Leigh Gath  🙂 Cheers muchly, Leigh 🙂 

I started out my personal research by reading about actually having a new disability, methods of coping or managing in this new situation. I openly spoke about how I felt on forums and took advise from other peoples experiences living within Ireland,  knowing you are not alone can help hugely and I found EDS Awareness Ireland a huge help, Thanks folks, please be sure to check out their page HERE 🙂 

The first main obstacle I came up against was getting myself a wheelchair or a device to help transport myself. This is not automatically given to you via your Doctor or hospital, so the first thing I did was ring the Irish Patients’ Association who are fantastic on giving advice to anyone who is a patient, either publicly or privately in Ireland. They are also fantastic to discuss problems with treatment within the health system, so if you feel something is not going correctly with treatment or if you have or are being treated inappropriately  talk to them.

From here I was led to Assist Ireland.ie and The Irish Wheelchair Association which provide lots of information about the types of mobility devices, aids and entitlements you can get and how to go about getting them both publicly through the HSE and privately if desired. Also information on Disabled parking permit and other entitlements and services.

Ring your local health nurse, which will usually lead onto a referral to an Occupational Therapist and or Physio and perhaps to a local Social Welfare officer to help financially or to apply for any benefits. This is a great start to get the ball rolling locally within your home, community and your immediate change of circumstance. 

Remember, there are supports and help, just dont be afraid to look and ask for these things 🙂 I hope some of these links can help you too 🙂 

The news with myself recently is just trying to adjust to this new lifestyle. We are having regular visits from the Occupational Therapist and sometime in the next couple of weeks a motorised wheelchair will arrive, allowing me to get out and about more, locally, without self propelling or the Hubby having to push me, it would be nice not to have to talk to someone behind me all the time while out for a roll!! 🙂 

How cool would this be? Click on the image to read the story behind the photo

As of yet, I dont know what kind it is, or if it is going to be any way portable, so for now all we know is that I will be working between the 2 chairs as they are deemed appropriate. 

I have begun my Physio in my local health center, which is great, but slow! I have a specialist letter to state that regular physio is not advised for me as it may aggravate the joints, muscles and pain even more and so pool therapy is recommended about 3 or 4 times a week for me. He is looking into where he can get me in for pool therapy as they do not facilitate it directly at the local health center so it may take weeks or months to start properly.

He has ordered a walker with arm rests for me to practice just standing straight up out of the chair as he thinks my legs are not ready for the pool yet and that getting me to stand even for just a few minutes a day will help maintain some bone strength, muscle tone and even help digestion. So until my own walker, measured to my size, arrives, he has lent me one to practice in the meantime. I am doing that when I am able, cant say I am seeing any progress yet but it is early days yet!

Other than that, I have my Rhumy appointment at the end of this month, expecting the zoomy chair in the next week, hopefully and noticing that my arms, chest and latisimus muscles have become very solid!!! Even in this short time. I definitely feel stronger in my upper body and I have even stopped napping during the day like I used to, all the time! It feels good, I do feel it will be super easy to put on weight in the chair though, so I have to watch that. 

…with a sweety and ice-cream obsession, thats gonna take time! :p 

Things I find help with POTS Symptoms

I have discovered a few things that really help the symptoms of POTS and thought it would be good to share for others who may not know about them, they are simple but seem to help me a great deal and anything that helps has to be good!!

#1: Firstly and its my savior, I have to say ginger really is a lifesaver!! I get really bad nausea most days, so bad im rendered sobbing into a bucket off the edge of the bed and it really is a pitiful sight! However, the hubby did his research while I was having a bad episode and he really wanted to help. We found that ginger tea works almost instantly in settling nausea and upset stomach. Tastes a bit yuck but I wouldn’t care if it helped and boy does it!

If you have real ginger it works best, Ginger and Lemon tea bags are good too but dont work as fast or as strong. What I normally do is get a Ginger and Lemon teabag, brew it and also add a tea spoon of real finely chopped or ground ginger so that its not just the flavour your ingesting but the actual ginger itself and it works almost instantly!! Its a must!!

I am blessed that the better half has packed out the home cooking with ginger too and I have found I am now waking with little or no nausea in the mornings, its great and leads me to the next tip!

 #2Home Cooking and changing eating habits really help to alleviate the symptoms of POTS. People with POTS have a strange diet change and usually it goes against what every Dr. and Health pro would tell you to do! At the start when I was first diagnosed, I hadnt cut out certain things like: Starchy Carbs, Dairy, Sweets and take away or processed foods or increasing things like Salt (20 grams a day for me but ask your Dr. for individual cases) to increase blood pressure and pulse, black coffee for heart and energy stimulation, All these things have a huge impact on symptoms. As soon as I started to follow this advice I felt great the very next day with only tiredness to battle which is easy without pain and sickness!!

#3: Keep Hydrated, it is soooo important for everyone to keep hydrated but especially people with POTS because of the fluids lost during certain symptoms (I don’t need to gross you out!). I find electrolyte drinks like Powerade excellent but others likeLucozade isotonic drinks give me headaches so you have to find the one that works for you. Electrolyte drinks hydrate faster than water but you should try to get at least 2L of fluids into you a day in the form of water mainly and then these drinks 2nd.

#4: Know how to rest during important times like showering where your body is under stress, Get a shower chair and limit the amount of overhead arm movements as this can trigger syncope/fainting episodes very easily because of the heat of the water and blood pooling in the legs. Reduce the heat of the water to what you can tolerate and before you leave the shower, rinse your legs in cold water to cause your blood vessels to constrict and pump blood back up to the heart and brain.

#4.1: If going from a lying position to standing, sit with your legs down for a few minutes before attempting to stand up, this will allow your body to acclimatise to the change of position and will reduce the risk of fast blood pooling and syncope episodes.

#4.2: If you find you slump or hit a wall in the middle of the day while up and about, take a bed break! I find even as little as an hour snoozing can give me a tiny boost of energy for the rest of the evening, its minimal mind you but you would risk further symptoms triggering if you don’t listen to your own body and take a rest when you need to!

#5: Take Vitamin D, Ask you Dr. first to be sure but its known as the sunshine supplement, this is brilliant as people with POTS may not be very mobile and cant get outside as often as they should. As well as taking all the meds we need to take, Vitamin D is known to help nearly all organ tissues in the body and it has psychological benefits,  as does real sunshine, ever heard of the winter blues? A lot of people get affected by the lack of sunshine in winter and it can actually trigger depression, its all down to the lack of vitamin D. Sometimes its hard not to feel down with an illness so increase this and you will increase happiness as well as organ tissue health! :)

 #6: Avoid Stairs on bad days, goes without saying really but putting that pressure on your heart rate when you are already feeling low is a very bad idea and you do not want to faint at the top of a stairs!

#7: This is going to sound cheesy but THINK POSITIVE!!! I have been doing heavy research on POTS and Dysautonomia in general and the amount of what I call ‘Doom & Gloom’ videos online is frightening! Those videos or write up’s of how bad and terrible people have been feeling, Avoid this crap! Really, the power of positive thinking can really float you a long way and I’m no hippy but it works! So concentrate on the things you CAN do and not the things you cant, be happy for what it is you have and not what you haven’t got, thinking like this really does make a difference. Use your time wisely and creatively and share your experience so that others can share alike, you never know, ya might learn something along the way! ;)

#8: After being advised by my Dr’s in the hospital before leaving, they gave me and told me to get some Compression or Embolism Stockings to help stop the level of blood pooling that happens in my legs. They have proven very helpful and on the days I don’t wear them I usually faint, when I do I can stand for longer and usually get more hours awake during my day so I highly recommend these for other Pots or Dysautonomia sufferers. They can be gotten from any pharmacy or from your local health nurse, also this brand: ‘Jobst‘ are excellent for support stockings of all different colours, shapes and sizes which is great to colour code with clothing and are far prettier than the usual plain white ones you get at the pharmacy! You can get half leg, up to the thigh and tights style stockings so which ever works for you, personally I find the higher the stocking the more support and benefit they are but each to their own and find what works best for you. Not only that but they suck everything in!! Thats gotta be good right?!! :p

 #9: Sunglasses are now a lifesaver! I don’t know which of the tablets are doing it to me (and it is the meds as the Dr. told me it would happen I just cant remember which one does it!) but I have become highly light sensitive and my prescription sunglasses from long before getting diagnosed with Pots are getting more use than ever. If you dont have sunglasses and are finding this with Pots/Dysautonomia meds I recommend a high UV filter in whatever shades you decide to get, dont skimp and get cheapy ones because they will ruin your eyes and have zero UV protection which will damage your eyes in the long run. Pay well once and mind them, it will be well worth it!

 #10: A blood pressure monitor and a heart rate watch are 2 things I have picked up and have started tracking my daily stats. Not only for myself but for my Dr’s as I will be seeing them so infrequently I would rather keep a full history on the days they haven’t seen me. I find them excellent for allowing me to slow down when I need to and for when I know I can push myself that little bit harder too.

 The heart rate watch is pretty cool as it doesnt need a chest strap and I got it on sale at Amazon. Its a Womens Sportline 710 analogue heart rate monitor watch and is very accurate and not as bulky as other heart rate watches. Click on the link there if you want more details but its currently on sale on Amazon for half the price you would buy in stores.

The Blood Pressure monitor is a Sanitas SMB 30 Upper Arm monitor and I picked this little beauty up in Lidl for €17.99!! It works perfect and I didn’t break the bank! Upper arm is considered the most accurate, try and avoid the wrist monitors, they cant give as accurate a reading (apparently, im no expert, just going by reading lots of stuff and what my Dr. said!)

#11: Also for keeping track of my stats, I use my Android phone and have an app called ‘BP Log‘ which has a lovely clean, no nonsense interface and is very simple to use.

Anyhow, that’s all for now until I think of more, if you have any questions or want to take part in the blog or new youtube channel (Where there will only be positive videos, none of the ‘Doom & Gloom’ kind!) please let me know. Thank you for your interest.

Lette (The Fainting Goat!)