'Please don't judge the way I deal with the pain you have never experienced.'
Symptoms change on a daily basis. That's the fun of this game. We never know what the day is going to throw at us. Making our lives 1000 x 's harder. We don't have days or weeks to come to terms with the flare ups and change in symptoms we have to deal with them there and then.
You may know someone who is suffering with Lyme that may be suffering with chronic headaches and although you have joint pain you don't suffer with headaches. It does not mean you don't have Lyme. Remember when you become infected we also kindly get given a number of co-infections alongside them. This means all patients are unique and suffer differently at different stages.
Today I wanted to raise the example of how symptoms effect us physically and emotionally.
Headaches - headaches & migraines are a real pain. As they bring along many other fun symptoms to the party;
Blurred vision
Light, noise & light sensitivity
Sore throats
Neck ache
Loss of balance
Nausea
Lack of concentration
Brain fog
So you have the headache to deal with along with all the above when getting through your day.
You have lots to think about now, films, programmes and documentaries are not worth trying. You won't remember or be able to follow them, you won't remember the main story lines. So if you had a cinema trip planned or a girlie movie night you may have to delay plans, or for the girlie night focus more on the catching up. Parties, concerts and listening to live bands are are no go! You won't be able to hack the light, sound and noise. You may have to settle for a small gathering or a night alone. It will heighten the headache and make you feel even worse. Long car journeys- this will increase symptoms with the movement especially and increases nausea. Stay in the area and keep plans based around quieter settings. Whether this is a coffee at the local cafe or a drink in the garden.
What can I do to help?
Eat more magnesium rich foods:
-cashew nuts
-brown rice
-watermelon
-almonds
Coffee is also said to help headache symptoms ( not drunk is excess ).
Drink plenty of water to keep hydrated.
-Nausea - this symptoms is a curse. Constantly feeling sick and feeling like you want to be sick is no fun!
It makes knowing what you fancy to eat difficult and the feeling makes you feel sluggish and tired.
If you are suffering with nausea avoid long car journeys the movement will heighten your feelings. So this may mean making plans closer to home. Don't eat anything or put yourself in a position that may cause nausea to turn to sickness. This may mean taking your own food to restaurants or events so you have food but you aren't risking anything.
What can you do to help?
- Take you own food with you.
- Eat anti-inflammatory foods and spices;
Ginger, turmeric, cinnamon, lemons, peppermint teas.
-Stomach ( cramps, discomfort, bloating and aching ). Having stomach problems is not pleasant, you feel sluggish, tired and irritated. Avoid eating anything that doesn't agree with you. This may mean you have to avoid going out for food for the time being or buying that packet of biscuits you love to work yourself through at night. Keep a hot water bottle close by and try to rest. With stomach pains you won't want to have to think about hacking big, long days out. You just simply want to sit and lie down. So that shopping trip may have to be altered and made to coffee and catch up. Or that trip to the museum may have the be put off for tomorrow.
What can I do to help?
- rest
- apply heat
- eat plenty of fibre rich foods and anti-inflammatory foods; ginger, mint, yoghurt, bland foods - rice, potatoes, bread, leafy greens, fruit & vegetables.
-Joint pain - when your joints are really giving you jip it is definitely advised to delay the more active activities; shopping, travelling around, sight seeing ( walking ) etc and any lifting activities; shopping, cleaning, self service cafes, bowling. Instead opt for seated activities; the cinema, a theatre show, meal out, coffee, catch up at home.
What can I do to help?
- rise your omega-3 fatty acids. Whether this is by taking a supplement or eating fish like mackerel, tuna or salmon.
-add more broccoli, cauliflower, sprouts and cabbage to your diet.
-Itchy skin- itchy skin is a 'newer' addition to my symptoms list but it's a horrible one. My legs are now have a purple tint and rashes all over. My shampoo began giving me problems and some materials are irritating my skin. Wear lose clothes with floaty material. Getting changed is taking longer than ever as you put something on then have to take it off because after a a while as you start to itch. So wear lose dresses and pants. I don't want to wear dresses at the moment as my legs are such a mess. Awakening my immune system has brought out a lot of the viruses out of my tissues. Though purple legs can be a result of not enough vitamin C which makes sense as my white blood cell count is still down due to being under a lot of pressure. Itchiness can be due to the Lyme causing more nerve pain as well as my liver. For the moment it is something I just have to accept and work with. When you lay itching all night though, you can't wear what you want to wear and your legs ( and my legs were my favourite feature ) look horrendous. It's emotionally crushing.
What can I do to help?
- Avoid cold weather or wrap up to avoid becoming unwell or the immune system being tested.
- Rest your legs.
- Eat as many vitamin C rich foods as you can;
Broccoli, red peppers, oranges, kale, brussel sprouts, green peppers.
- Take vitamin C supplements.
- Wear floaty, comfortable clothes.
-Burning - burning is an awful symptom. I constantly feel like I am walking on hot poolside tiles. Especially on my left side the burning radiates throughout the whole of my left side of my body. Like acid running through my veins. You feel sunburnt and it is truly uncomfortable. Lots of walking, trips out or being exposed too excessive heat is a no go. Opt for movie nights, coffee trips and seated actitives.
What can I do to help?
- Soak your feet / body is cold baths. I have regularly woken Mama up doing this when I need to through the night.
- Don't walk if you don't have to.
- Keep the palms of your feet off the floor or a surface. Cross your legs or lift your palms up. The friction again a surface heightens pain.
-Sore throats - sore throats make it difficult to swallow and talk. On these days it may be best to take a family day so they understand if you don't want to talk much or go out in a 'bigger' group so you can just listen to the conversation not have to always make conversation or be the one responding.
What can I do to help?
- Keep throat spray with you at all times. To relieve the pain when needed.
- Avoid sharp, crunchier foods. Opt for boiled vegatables, boiled potatoes, rice, steamed fish and meats, yoghurts, soups over fried food, crisps, corn flakes, battered foods. That can scratch and irritated the throat.
Sophie Tip; eat frozen grapes!! Amazing! Really, really helps ease the throat. They are great for antioxidants that are fab for the immune system to help heal your body and they taste like sweets - win, win all around.
Here are just a few of the symptoms we face on a daily basis. When you are chronically ill you already feel like you have lost your life that you don't want to allow your symptoms to take even more of your life and just be laying in bed or sat alone on your sofa all the time. You want to see friends and family and enjoy the pleasure you can still enjoy!!
However it is very hard to know what to do for the best a lot of the time.
So I hope the above has given you some suggestions and advice when you do suffer from any of the symptoms above.
Tomorrow I wlll focus my blog on how to help & deal with a friend, family member of loved one who is suffering from a chronic illness.
To help them make decisions, understand when you may have to adapt events/meet ups and activities around symptoms and how the person is feeling on the day. How to deal with it all. As, as a friend or loved one it is also extremely difficult to know what to do/ what to suggest.
I hope you are all enjoying your weekend and this post helps you in some way, watch out for the next one.
Love you all so much.
S
Xoxo
