Last week saw me having a physio appointment on Wednesday where the therapist treated me with ultrasound and acupuncture. TBH I didn't feel anything while these therapies were taking place. Thursday was the day I was pinning hopes of extensive pain relief on.
When I was told I was going to have facet injections and sacral-iliac injections I initially thought "how bad can that be?" .....Oh how wrong was I. I didn't realise that I would have to go in to hospital on the day unit and be taken to theatre for them to be administered. SO! Thursday morning I do as the letter advised and had a light breakfast, clear fluids up until 11am then nil by mouth. Paul is at work until 1pm so I went to the hospital on my own using the wheelchair. Paul was to pick me up after the procedure. I don't have a long wait to be shown to a trolley to wait for the consultant to come along, explain the procedure, the possible complications and for me to sign the consent form.
By the time the porter comes to take me to theatre I am sporting the latest in NHS fashion...the fabulous rear tied gown and I am thinking about having a bacon buttie because it is now 5pm, my stomach thinks my throat has been cut and I'm in need of sustenance including a large cup of coffee.
It is noticed that I haven't been fitted with a cannula. 3 nurses, 1 doctor and 5 attempts later the cannula to administer pain relief is finally fitted. I'm trying to find the funny side at this point as the nerves are beginning to kick in. As I am laid on the table on my front with all my back and rear exposed I start chuckling to myself. When asked what is so funny, I replied "all I can hear in my head is the song 'I saw the whole of the moon'" it got a chuckle from the nursing staff. I am thankful that all the staff including the Dr had great senses of humour.
Because my hearing is pretty poor, I was allowed to wear my hearing aids in theatre, however because of the amount of machinery in there the hearing aids were whistling. There was a nurse who could sign a bit too. She sat by my head and when the Dr spoke she relayed it to me so I could hear her and lip read. It was such a thoughtful act and made me feel at ease. Not being able to hear when something is happening to you can be very disorientating and upsetting.
The first injections are the sacral-iliac ones....two of them....for those of you less familiar with the spine, these joints are at the bottom near your bottom. The area is numbed with local anaesthetic. I like to think I have a high pain threshold but this was something else. Not wanting to move or flinch while the needles are being inserted was really hard I ended up biting the pillow and there may have been the odd swear word.....I did apologise for the language after to be told they have heard much worse! The Dr said "No pain, No Gain!" The 6 facet injections came next. After the sacral-iliac ones these were a breeze!
Following the procedure I am taken back to the day unit with a blinding headache. Waiting for me was a cup of coffee and a sandwich. It tasted so good!
After an hour a nurse comes to help me get dressed. Here's me thinking that's probably the one thing I can do today as I had brought comfortable clothing. Nope! I stood up and promptly fell on the floor. The lovely nurse laughed and said "That is exactly why I am here" I did say did she want to take a picture and post to social media and have a chuckle before she helped me up. We were both laughing a lot. That's exactly what got me through the injections....my sense of humour and the humour of the Dr and nursing staff. If you don't laugh you will cry.
The feeling came back in my legs over night although I still have some weakness in my right leg. My sciatica is a lot better and I am waiting to see if my pain is significantly reduced over the coming weeks. I have 8 black and blue bruises of varying sizes up my back. The injections apparently have a 1:3 chance of working, if they don't, I can have the nerve burnt. The injections don't last forever and they will wear off. .....hence the No Pain, No Gain. If they work it will be worth it. The thing with living with a chronic condition is you will try almost anything to get some relief from the constant pain.
I can't praise Queens Hospital Day Unit, the nursing staff and Dr Huntly enough. It's not a pleasant experience but they really put me at ease and even managed to get me through the injections still laughing at the end of it. One nurse even said see you again soon......I'm hoping not that soon, but knowing the care was good makes the thought of having to go through it all again in the future a bit easier.
Wishing you all a relatively pain free week. Use your spoons wisely
xxxx
Monday 16 March 2015
Thursday 5 March 2015
Google is NOT always your best friend!
The thing with having a chronic illness and taking many different medications to control/suppress/relieve symptoms is you read on the internet the side effects and what your symptoms *could* be .......bad, Bad BAD move!! By the time you have read all the possibilities that the internet has fired back at you, you have convinced yourself that you have something that is going to kill you pronto!
There are many places on the internet where you can get correct advice on your illness and the medications to treat it. Arthritis Research UK http://www.arthritisresearchuk.org/ has a wealth of information on the 200+ forms of arthritis, the diagnosis procedure and the many treatments. They also have tips and advice on how to manage and live you life.
I get increasingly annoyed when I hear or read advice which is basically scaremongering. The ONLY person you should be consulting about your medications is a health care professional, whether that would be your GP, Consultant or Pharmacist. People get information wrong and taking advice from someone who is not qualified can be dangerous. The other thing is the amount of people who feel the need to give advice for faddy trending diets as "try drinking aloe vera".....YUK!!! "try going on a juicing diet" they swear that they will cure you and that you will be pain free and have your old life back. There is no medical research that proves this. BUT if it works for you, fantastic, but please don't give me the hard sell for something I can not afford to buy.
Now I've got that off my chest I can update you on my creaky life!
I found a lump in my neck/shoulder in November. Its getting increasingly bigger and my neck aches to the point of distraction. I have finally got an appointment for an ultrasound on 22nd March...yes that will be a Sunday. The doctor wants to check if it is an enlarged lymph node. This lump is hard, solid and unmoveable. Hopefully I don't have to wait long for the results. It is possible that it is a calcification due to my RA, keep your fingers crossed please.
I have a busy week next week....physio .....to keep my joints moving and my muscles from wasting, then spinal injections under sedation and x-ray. I have to say I am not looking forward to injections but if it gives me a number of months pain free (would be ideal) or more realistically reduces my back pain it has to be worth it. Apparently it takes a few weeks for the injections to kick in and do their stuff and I will feel bruised after the procedure.
I'm very lucky to have a fabulous support network. I am aware that people don't necessarily have an understanding support network. I put together a short video which is an alternative to the Spoon Theory which is used to explain chronic illness. Here is the link. https://www.facebook.com/TheInvisibleChallenge/videos have a watch, like and share. I have had a lot of good comments and messages saying that it has helped them and they have shown it to family members and friends.
Here are a list of excellent social network support groups:
Fibromyalgia : UK Fibromyalgia Friendly Group https://www.facebook.com/groups/1571405076449852/
Sjogrens Syndrome: https://www.facebook.com/groups/454589521294750/
Rheumatoid Arthritis: Rheumatoid Arthritis Wonky Club https://www.facebook.com/groups/1522768504613735/
Rheumatoid Arthritis in the UK https://www.facebook.com/groups/2410482794/
Save our Spoons https://www.facebook.com/groups/SaveOurSpoons/
Rheumatoid Arthritis (RA) Squeaky Joints https://www.facebook.com/groups/squeakyjoints/
Arthritis and Fibromyalgia Chat Group https://www.facebook.com/groups/165181077006636/
Being in a support group online gives you support from people who are going through exactly what you are going through. These groups have had a positive influence in my life and keep me positive. I also run The Invisible Challenge https://www.facebook.com/TheInvisibleChallenge which I use to spread positivity, break down barriers and negativity surrounding living with an invisible illnesses. I post positive pictures, videos and advice including links to information.
Today I have posted a spoon selfie #spoonselfie have a look on FB and Twitter for Save our Spoons, you'll find my selfie too :-)
Until next time
Use your spoons wisely and stay pain free xxxx
There are many places on the internet where you can get correct advice on your illness and the medications to treat it. Arthritis Research UK http://www.arthritisresearchuk.org/ has a wealth of information on the 200+ forms of arthritis, the diagnosis procedure and the many treatments. They also have tips and advice on how to manage and live you life.
I get increasingly annoyed when I hear or read advice which is basically scaremongering. The ONLY person you should be consulting about your medications is a health care professional, whether that would be your GP, Consultant or Pharmacist. People get information wrong and taking advice from someone who is not qualified can be dangerous. The other thing is the amount of people who feel the need to give advice for faddy trending diets as "try drinking aloe vera".....YUK!!! "try going on a juicing diet" they swear that they will cure you and that you will be pain free and have your old life back. There is no medical research that proves this. BUT if it works for you, fantastic, but please don't give me the hard sell for something I can not afford to buy.
Now I've got that off my chest I can update you on my creaky life!
I found a lump in my neck/shoulder in November. Its getting increasingly bigger and my neck aches to the point of distraction. I have finally got an appointment for an ultrasound on 22nd March...yes that will be a Sunday. The doctor wants to check if it is an enlarged lymph node. This lump is hard, solid and unmoveable. Hopefully I don't have to wait long for the results. It is possible that it is a calcification due to my RA, keep your fingers crossed please.
I have a busy week next week....physio .....to keep my joints moving and my muscles from wasting, then spinal injections under sedation and x-ray. I have to say I am not looking forward to injections but if it gives me a number of months pain free (would be ideal) or more realistically reduces my back pain it has to be worth it. Apparently it takes a few weeks for the injections to kick in and do their stuff and I will feel bruised after the procedure.
I'm very lucky to have a fabulous support network. I am aware that people don't necessarily have an understanding support network. I put together a short video which is an alternative to the Spoon Theory which is used to explain chronic illness. Here is the link. https://www.facebook.com/TheInvisibleChallenge/videos have a watch, like and share. I have had a lot of good comments and messages saying that it has helped them and they have shown it to family members and friends.
Here are a list of excellent social network support groups:
Fibromyalgia : UK Fibromyalgia Friendly Group https://www.facebook.com/groups/1571405076449852/
Sjogrens Syndrome: https://www.facebook.com/groups/454589521294750/
Rheumatoid Arthritis: Rheumatoid Arthritis Wonky Club https://www.facebook.com/groups/1522768504613735/
Rheumatoid Arthritis in the UK https://www.facebook.com/groups/2410482794/
Save our Spoons https://www.facebook.com/groups/SaveOurSpoons/
Rheumatoid Arthritis (RA) Squeaky Joints https://www.facebook.com/groups/squeakyjoints/
Arthritis and Fibromyalgia Chat Group https://www.facebook.com/groups/165181077006636/
Being in a support group online gives you support from people who are going through exactly what you are going through. These groups have had a positive influence in my life and keep me positive. I also run The Invisible Challenge https://www.facebook.com/TheInvisibleChallenge which I use to spread positivity, break down barriers and negativity surrounding living with an invisible illnesses. I post positive pictures, videos and advice including links to information.
Today I have posted a spoon selfie #spoonselfie have a look on FB and Twitter for Save our Spoons, you'll find my selfie too :-)
Until next time
Use your spoons wisely and stay pain free xxxx
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